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Lyme, or Not Lyme
I have been recently dumbfounded over the huge amount of information I have been finding out about Lyme...won't go into the details, as I am sure you all are aware of the plethora of controversy out there. I will be as short as I can...just trying to make sense of all this while I wait to try to get in with the only LLMD listed in Suffolk County (his office staff told me there could be a month long wait before I can get an appt).
Back in the end of May this year, I found a deer tick on myself. Not sure how long it was there. I looked up the mainstream guidelines, which said to look for the bullseye, and essentially forgot about it, as I didn't get the rash. Thereafter, in June, both myself, my mom, and my two girls (5 & 4) found several ticks on all of us--again, not sure for how long.
About ten days later, my mother got the bullseye rash, and I immediately sent her to the doctor, and he prescribed doxycycline 100mg 2x daily.
I then started looking up information about Lyme, because my mom started feeling really crappy and I wanted to make sure we were doing everything for her to get better. I then found that neck pain is a potential symptom of Lyme, which I had been having since the beginning of June, but because it felt like muscular pain, I thought I had been sleeping wrong (I have no other illnesses, and I am not on any medications for anything). I made a note of it, and then a couple of weeks later, I started getting intermittent joint pains that came and went, in my shoulders, elbows and hips. So there's the physical piece of what is going on. I started to worry, especially with all the information I was finding.
I then asked a physician to write me an Rx for the Lyme titer. I had it done on 7/12 at Stony Brook Hospital, which has a Lyme lab. 8. My test results were: ELISA was reactive (serum level 0.337; reactive cutoff 0.142); Western Blot: IGM serum band 41 positive, IGG serum bands 30, 45 positive.
I took these results to my primary, and he said I probably am sleeping wrong; maybe I have rheumatoid arthritis; maybe my thyroid function is off; maybe I need physical therapy. Offered me muscle relaxants for my neck, which I politely declined. Wants me to get xray of neck, further blood tests. He humored me and wrote me an Rx for one month of doxycycline 100mg 2x daily, but I am not sure what to do. I am especially worried about my daughters, who have had multiple ticks this season. My pediatrician won’t test them—says if there is no rash or other symptoms, they don’t have Lyme.
Has anyone had results similar to mine? Any experience with how to convince the pediatrician to do the test (from what I have read, it can be difficult to "see" in small children)? I would never forgive myself if, a couple of years from now, my kids turn up with advanced Lyme. Wouldn't it be better to find out now?
I am hoping to get in with the LLMD quickly; I believe he practices family medicine, so maybe he will help with the kids.
I am so confused by the information I am getting from my primary, the information I am reading and finding out, and what my intuition tells me. Something isn't right here.
Back in the end of May this year, I found a deer tick on myself. Not sure how long it was there. I looked up the mainstream guidelines, which said to look for the bullseye, and essentially forgot about it, as I didn't get the rash. Thereafter, in June, both myself, my mom, and my two girls (5 & 4) found several ticks on all of us--again, not sure for how long.
About ten days later, my mother got the bullseye rash, and I immediately sent her to the doctor, and he prescribed doxycycline 100mg 2x daily.
I then started looking up information about Lyme, because my mom started feeling really crappy and I wanted to make sure we were doing everything for her to get better. I then found that neck pain is a potential symptom of Lyme, which I had been having since the beginning of June, but because it felt like muscular pain, I thought I had been sleeping wrong (I have no other illnesses, and I am not on any medications for anything). I made a note of it, and then a couple of weeks later, I started getting intermittent joint pains that came and went, in my shoulders, elbows and hips. So there's the physical piece of what is going on. I started to worry, especially with all the information I was finding.
I then asked a physician to write me an Rx for the Lyme titer. I had it done on 7/12 at Stony Brook Hospital, which has a Lyme lab. 8. My test results were: ELISA was reactive (serum level 0.337; reactive cutoff 0.142); Western Blot: IGM serum band 41 positive, IGG serum bands 30, 45 positive.
I took these results to my primary, and he said I probably am sleeping wrong; maybe I have rheumatoid arthritis; maybe my thyroid function is off; maybe I need physical therapy. Offered me muscle relaxants for my neck, which I politely declined. Wants me to get xray of neck, further blood tests. He humored me and wrote me an Rx for one month of doxycycline 100mg 2x daily, but I am not sure what to do. I am especially worried about my daughters, who have had multiple ticks this season. My pediatrician won’t test them—says if there is no rash or other symptoms, they don’t have Lyme.
Has anyone had results similar to mine? Any experience with how to convince the pediatrician to do the test (from what I have read, it can be difficult to "see" in small children)? I would never forgive myself if, a couple of years from now, my kids turn up with advanced Lyme. Wouldn't it be better to find out now?
I am hoping to get in with the LLMD quickly; I believe he practices family medicine, so maybe he will help with the kids.
I am so confused by the information I am getting from my primary, the information I am reading and finding out, and what my intuition tells me. Something isn't right here.
A comment above: "Even top-tier llmds [test with ELISA and Western blot], but because they will treat for Lyme for clinical presentation a person will most likely be put on the ILADS approved treatments regardless of the test results."
I don't think that's accurate. MDs (including Lyme specialists) usually test with ELISA and Western blot, because the test results are useful and may help your insurance company pay for treatment without grumbling. Western blot and ELISA are the basic, every-doc-uses-them tests, and they are useful evidence for you, your doc, and your insurance company.
Not all insurance companies are so fond of the IGeneX PCR tests, so having the older and better known ELISA and Western blot tests are useful as additional data points for the doc AND for the insurance company.
If ALL the tests come back negative, it would be, imo, unusual for an MD to put a patient on antibiotics, but it is possible ... just not automatically done. The ELISA/W.blot tests and the IGeneX tests work in such different ways that they are a good cross-check on each other.
I don't think that's accurate. MDs (including Lyme specialists) usually test with ELISA and Western blot, because the test results are useful and may help your insurance company pay for treatment without grumbling. Western blot and ELISA are the basic, every-doc-uses-them tests, and they are useful evidence for you, your doc, and your insurance company.
Not all insurance companies are so fond of the IGeneX PCR tests, so having the older and better known ELISA and Western blot tests are useful as additional data points for the doc AND for the insurance company.
If ALL the tests come back negative, it would be, imo, unusual for an MD to put a patient on antibiotics, but it is possible ... just not automatically done. The ELISA/W.blot tests and the IGeneX tests work in such different ways that they are a good cross-check on each other.
Band 41:
I wrote this (just passing on a theory) in another thread here:
I've always sort of 'tossed' band 41 away as being due to cross-reactivity to other problems: gingivitis being just one of them.
Now I'm re-thinking it. But it IS just a theory still.
There's one well known doctor/researcher who has postulated that B. miyomatoi might be one of the reasons for band # 41 showing up on almost all our Western Blots.
His theory: there is cross reactivity not only between the Treponema flagellins (the 'tail') but cross-reactivity with B. miyamotoi. So---- before the statistics were in for B. miyamotoi ("what isn't looked for isn't found") perhaps a whole bunch of us had been infected by that species. As I said----- it's just a theory.
" In both technical and nontechnical contexts, theory can also be synonymous with hypothesis, a conjecture put forth as a possible explanation of phenomena or relations, serving as a basis for thoughtful discussion and subsequent collection of data or engagement in scientific experimentation in order to rule out alternative explanations and reach the truth.
In these contexts of early speculation, the words theory and hypothesis are often substitutable for one another: Remember, this idea is only a theory/hypothesis; Pasteur's experiments helped prove the theory/hypothesis that germs cause disease.
Obviously, certain theories that start out as hypothetical eventually receive enough supportive data and scientific findings to become established, verified explanations. Although they retain the term theory in their names, they have evolved from mere conjecture to scientifically accepted fact."
http://dictionary.reference.com/browse/theory
I wrote this (just passing on a theory) in another thread here:
I've always sort of 'tossed' band 41 away as being due to cross-reactivity to other problems: gingivitis being just one of them.
Now I'm re-thinking it. But it IS just a theory still.
There's one well known doctor/researcher who has postulated that B. miyomatoi might be one of the reasons for band # 41 showing up on almost all our Western Blots.
His theory: there is cross reactivity not only between the Treponema flagellins (the 'tail') but cross-reactivity with B. miyamotoi. So---- before the statistics were in for B. miyamotoi ("what isn't looked for isn't found") perhaps a whole bunch of us had been infected by that species. As I said----- it's just a theory.
" In both technical and nontechnical contexts, theory can also be synonymous with hypothesis, a conjecture put forth as a possible explanation of phenomena or relations, serving as a basis for thoughtful discussion and subsequent collection of data or engagement in scientific experimentation in order to rule out alternative explanations and reach the truth.
In these contexts of early speculation, the words theory and hypothesis are often substitutable for one another: Remember, this idea is only a theory/hypothesis; Pasteur's experiments helped prove the theory/hypothesis that germs cause disease.
Obviously, certain theories that start out as hypothetical eventually receive enough supportive data and scientific findings to become established, verified explanations. Although they retain the term theory in their names, they have evolved from mere conjecture to scientifically accepted fact."
http://dictionary.reference.com/browse/theory
" I don't understand how they can order the ELISA and Western Blot, and then tell me that it really doesn't' mean anything. Why did you order it, then? "
I'm not an admirer of the ELISA and WB tests performed by CDC approved labs. BUT tests pretty much have to be ordered for a doctor to 'prove' that a person needs this or that medicine/treatment for insurance purposes but also for other reasons.
Even top-tier llmds do that, but because they will treat for Lyme for clinical presentation a person will most likely be put on the ILADS approved treatments regardless of the test results. That's one of the reasons so many top-tier LLMDS don't take insurance; the tail doesn't wag the dog then. And I imagine that a positive test result will help a person who is sitting on the fence about antibiotics would want a test performed. But even Igenex tests give negatives when a person definitely has Lyme. So........
A follower of the IDSA/CDC rules, when the tests are negative won't treat for Lyme even though the person has the clinical presentation for Lyme.
A follower of the IDSA/CDC rules, even when the test is positive will undertreat with too low a dose and too short a time.
Try not to get TOO angry with what your PCP is or is not doing. (Yeah, right LOL) S/he is doing 'what's in her/his nature'. and what is expected as a follower of the IDSA/CDC rules.
Forgive a little joke about a frog and a scorpion and doing what is in one's nature (as dictated by the IDSA or the CDC).
"A frog that is asked by the scorpion to carry it across the water. To allay the frog's suspicions, the scorpion argues that this would be safe since, if he stung the frog, both would drown. The frog agrees, but midway across the river the scorpion does indeed sting the frog. When asked the reason for his illogical action, the scorpion explains that this is simply his nature."
Except for the doctor ----- it's not illogical. It's the way to keep his/her job.
I'm not an admirer of the ELISA and WB tests performed by CDC approved labs. BUT tests pretty much have to be ordered for a doctor to 'prove' that a person needs this or that medicine/treatment for insurance purposes but also for other reasons.
Even top-tier llmds do that, but because they will treat for Lyme for clinical presentation a person will most likely be put on the ILADS approved treatments regardless of the test results. That's one of the reasons so many top-tier LLMDS don't take insurance; the tail doesn't wag the dog then. And I imagine that a positive test result will help a person who is sitting on the fence about antibiotics would want a test performed. But even Igenex tests give negatives when a person definitely has Lyme. So........
A follower of the IDSA/CDC rules, when the tests are negative won't treat for Lyme even though the person has the clinical presentation for Lyme.
A follower of the IDSA/CDC rules, even when the test is positive will undertreat with too low a dose and too short a time.
Try not to get TOO angry with what your PCP is or is not doing. (Yeah, right LOL) S/he is doing 'what's in her/his nature'. and what is expected as a follower of the IDSA/CDC rules.
Forgive a little joke about a frog and a scorpion and doing what is in one's nature (as dictated by the IDSA or the CDC).
"A frog that is asked by the scorpion to carry it across the water. To allay the frog's suspicions, the scorpion argues that this would be safe since, if he stung the frog, both would drown. The frog agrees, but midway across the river the scorpion does indeed sting the frog. When asked the reason for his illogical action, the scorpion explains that this is simply his nature."
Except for the doctor ----- it's not illogical. It's the way to keep his/her job.
Ugh...this is so frustrating. All good points to consider, and pretty much what I've been thinking about. I think I am going to hold everything for the next few days, try to see if I might be able to get in sooner with the LLMD, and pay attention to symptoms. My five year old started complaining about a pain on the left side of her neck last night. This whole thing is such an emotional drain, and the medical community has seriously fallen short in the help category. I came away from my appointment with my primary doctor feeling worse than before I went. I don't understand how they can order the ELISA and Western Blot, and then tell me that it really doesn't' mean anything. Why did you order it, then? Since I did show reactive to the ELISA, positive for band 41 and others, perhaps maybe it isn't Lyme, but perhaps it is....or, there is something going on-as I understand it, band 41 indicates I do have something there that should be looked at further, so why tell me stupid things like maybe I am sleeping wrong and offer me muscle relaxants. Any semi-intelligent being, I think, should see that something doesn't make sense. Sorry for the long venting session again. My neck is hurting a lot this morning, and I know it's not because I slept wrong, and it is not an imagined symptom.
I'm not medically trained, but there are upper limits to any medication dosage. At some point, too much is overkill and not effective, plus, could have side effects as an overdose. Where that level is with doxy, I don't know .... but more is not always better. All the more reason to get to a knowledgeable doc into the picture.
"I've thought about taking 300 mg per day instead, but that will only leave me with 20 days worth, so it would be a gamble if I can get in with the LLMD within that time. "
I can see your rationale for doing that---- but another rationale is the one that rico said above, and which I totally agree with:
"Underdosing does indeed cause a problem when it doesn't kill them all. The remainder go into hiding and then pop up later to torment you. Taking antibiotics can also interfere with your antibody development, which makes it more likely you'll test false negative later. "
It's your decision, of course, but just wanted to let you know.
I can see your rationale for doing that---- but another rationale is the one that rico said above, and which I totally agree with:
"Underdosing does indeed cause a problem when it doesn't kill them all. The remainder go into hiding and then pop up later to torment you. Taking antibiotics can also interfere with your antibody development, which makes it more likely you'll test false negative later. "
It's your decision, of course, but just wanted to let you know.
Wow-thank you so much for sharing your experience. I am going to check out the movie, book and website over the next week. It troubles me that if I wasn't such an answer seeker and general pain in the ***, my mom, myself and my kids might have wound up in deep trouble. I feel bad for those who trust and don't ask questions-not their fault, though, since the field of medicine has become so paternalistic. God forbid you ask too many questions. I have been with my pediatrician since my girls were born, but I felt like I was being ridiculed for continuing to ask questions after he said if there was no rash, we didn't have to worry. I mean, I made sure to back up what I've found on websites with publications in scientific journals, and it seems to be widely disseminated information now that the number of those who become infected without a rash is higher than previously thought.
Thank you for the suggestions for the LLMD. I think my mom might need to go as well, so hopefully he will see the whole family. She just finished a month of doxycycline last week, and she had the rash, so she started early. But, she told me yesterday that she keeps getting intense pain on the bottoms of her feet still, and a red flag went up.
I'm bookmarking this site. In just a day I feel better that I've been able to at least start to make some sense of this....I am going to fill the doxy Rx...I've thought about taking 300 mg per day instead, but that will only leave me with 20 days worth, so it would be a gamble if I can get in with the LLMD within that time. Yikes. And my kids-an extra thank you on that....they are my world and god forbid anyone gets in the way of their health. I am at least going to get them tested-whatever it takes. A friend of mine who is a nurse suggested I take them to a walk in/urgent care center on the weekend, and tell them they had multiple tick bites, and insist on having their blood drawn. If I don't hear back from the LLMD by next week, I think I will do that.
Thank you for the suggestions for the LLMD. I think my mom might need to go as well, so hopefully he will see the whole family. She just finished a month of doxycycline last week, and she had the rash, so she started early. But, she told me yesterday that she keeps getting intense pain on the bottoms of her feet still, and a red flag went up.
I'm bookmarking this site. In just a day I feel better that I've been able to at least start to make some sense of this....I am going to fill the doxy Rx...I've thought about taking 300 mg per day instead, but that will only leave me with 20 days worth, so it would be a gamble if I can get in with the LLMD within that time. Yikes. And my kids-an extra thank you on that....they are my world and god forbid anyone gets in the way of their health. I am at least going to get them tested-whatever it takes. A friend of mine who is a nurse suggested I take them to a walk in/urgent care center on the weekend, and tell them they had multiple tick bites, and insist on having their blood drawn. If I don't hear back from the LLMD by next week, I think I will do that.
Sounds like you have good advice here. I agree that 200mg/day of Doxy is too low to treat a definitive case of Lyme (bulls eye rash or positive WB). It should be 200mg twice a day from what I've read and heard from LLMDs.
Underdosing does indeed cause a problem when it doesn't kill them all. The remainder go into hiding and then pop up later to torment you. Taking antibiotics can also interfere with your antibody development, which makes it more likely you'll test false negative later. (Happened to me.)
I think its downright stupid that doctors won't test for Lyme after a tick bite. But they've been taught to wait for a rash, and if no rash, then swollen joints, fatigue, and headache. Unfortunately, those aren't always the first symptoms, and by the time they show up, the infection is well established and it's much harder to get rid of.
Given the hell I've been through, I'd find my kids a new doctor who is willing to order tests for them on tick bites alone. Less than half of Lyme patients see a rash, so it's a big gamble to wait for one. There are way too many stories out there of kids who got bit by ticks and ended up with nasty, late stage Lyme years later, often around puberty.
At my last LLMD appointment, I was checking out while a woman, her two daughters, and a granddaughter were all checking in. They all had appointments booked for that afternoon. They'd driven over 1000 miles to get there to find a doctor they felt they could trust. I know that's an unusual example, but better to get on top of it now than to end up that desperate.
I encourage you get your kids in to the LLMD with you, even if it's for a very short appointment for the purpose of ordering tests. I encourage you to go for IGenex. Stonybrook shows a whole lotta bands in the Western Blot, but they still turn up different results than other labs, do.
You're asking the right questions! Keep plugging away at it! I have a young child, and I would do whatever it took to get her tested and treated properly if necessary. A few hundred bucks out of pocket early on is a whole lot better than the 10's of thousands a late stage case can cost to treat.
Underdosing does indeed cause a problem when it doesn't kill them all. The remainder go into hiding and then pop up later to torment you. Taking antibiotics can also interfere with your antibody development, which makes it more likely you'll test false negative later. (Happened to me.)
I think its downright stupid that doctors won't test for Lyme after a tick bite. But they've been taught to wait for a rash, and if no rash, then swollen joints, fatigue, and headache. Unfortunately, those aren't always the first symptoms, and by the time they show up, the infection is well established and it's much harder to get rid of.
Given the hell I've been through, I'd find my kids a new doctor who is willing to order tests for them on tick bites alone. Less than half of Lyme patients see a rash, so it's a big gamble to wait for one. There are way too many stories out there of kids who got bit by ticks and ended up with nasty, late stage Lyme years later, often around puberty.
At my last LLMD appointment, I was checking out while a woman, her two daughters, and a granddaughter were all checking in. They all had appointments booked for that afternoon. They'd driven over 1000 miles to get there to find a doctor they felt they could trust. I know that's an unusual example, but better to get on top of it now than to end up that desperate.
I encourage you get your kids in to the LLMD with you, even if it's for a very short appointment for the purpose of ordering tests. I encourage you to go for IGenex. Stonybrook shows a whole lotta bands in the Western Blot, but they still turn up different results than other labs, do.
You're asking the right questions! Keep plugging away at it! I have a young child, and I would do whatever it took to get her tested and treated properly if necessary. A few hundred bucks out of pocket early on is a whole lot better than the 10's of thousands a late stage case can cost to treat.
All very well said! I agree with you on all of it, and would do as you propose.
I'm not medically trained, so can't give you medical advice, but I might go ahead and take the doxy. Of course tell the LLMD that you are on it, what dose, for how long, but that won't slow the doc down. It could even help you, but I don't know for sure. I don't think it would hurt (not medicallyl trained here). Doxy taken early enough can be helpful. The problem is that many of us don't know how long we've had Lyme, for the reasons you state: who knows when you first got bitten, and how many times since then, and which of those ticks had Lyme?! So many unknowns, so at a certain level, it's a guess. But think about it. Others here may have opinions too. (Like you, I don't want to take unnecessary meds, but doxy is not anything to be afraid of, from what I hear, and it may do you some good. Dunno. One thing you will learn from Lyme is to accept the ambiguities and plow ahead when it seems reasonable.)
If Burrascano says 200mg/twice a day, then I might do that, if you'll see the LLMD before you run out ... I really don't know. I'm not one to freelance on meds, and it sounds like you aren't either -- but sometimes you gotta do what you gotta do.
I don't think doxy is usually effective on the co-infections. I had Lyme and babesiosis, and the meds were completely different for each one. (And .. my doc didn't give me doxy at all. There are few predictably predictables in Lyme and the co-infections. It's not like the rest of medicine that seems to settled; much is still being learned about Lyme, like the early days of AIDS.)
You say, "I looked up how to tell symptoms in young children, and they are so difficult to tell—increased irritability? Really?" I had to laugh. You are SO right. I like your attitude, and that will take you a long way in dealing with Lyme.
I would also do as you are, calling the LLMD and getting put on the cancellation list. Once you are a patient of his/hers, it will perhaps make it easier to wedge your kids into the doc's schedule for evaluation and testing if you decide to do that. Kids can be hearty, so don't worry. Do what you can. It will be okay.
You say, "Why wouldn’t a pediatrician want to be sure? The test is much less expensive than the cost of health care down the road if it is untreated." THAT is the million dollar question. It's just where we are with Lyme vs the medical community; eventually they'll wise up after enough of them and their own families get sick. In the meantime, thank heaven for LLMDs.
Your primary doc may never get on board with the LLMD approach to Lyme diagnosis and treatment, so you may have to agree to disagree and just let the conversation pass. On the other hand, he may learn something from your experience if he's really a smart guy. Lyme has a funny way of scaring the wits out of nonLLMDs who are asked to walk on the wild side and go against the IDSA, tho, so don't hold your breath.
We're always open for rants -- will look forward to your updates. Let us know how we can help.
------------------------------------
PS: If you have the time and the inclination, there is a documentary called "Under Our Skin" made a couple of years ago. I think (?) it's on YouTube (or somewhere on the net) and explains well what Lyme is all about in how it affects your life (tho is not focussed on the medical/scientific side). It follows the stories of a few people with Lyme. My only objection to it when I saw it was that it showed people with some very bad symptoms that I thought were overly scary, so if you watch it, don't be afraid that you will become like that; it doesn't happen to everyone nor even to many or most of us. Lyme interferes with daily life but does not usually make us bedridden. The movie can be useful to explain to uncomprehending family and close friends what you are going through, tho.
You say, "I feel like I'm in a weird movie." That is an excellent description of having Lyme and having to *deal* with Lyme and the medical community.
Keep us posted!
I'm not medically trained, so can't give you medical advice, but I might go ahead and take the doxy. Of course tell the LLMD that you are on it, what dose, for how long, but that won't slow the doc down. It could even help you, but I don't know for sure. I don't think it would hurt (not medicallyl trained here). Doxy taken early enough can be helpful. The problem is that many of us don't know how long we've had Lyme, for the reasons you state: who knows when you first got bitten, and how many times since then, and which of those ticks had Lyme?! So many unknowns, so at a certain level, it's a guess. But think about it. Others here may have opinions too. (Like you, I don't want to take unnecessary meds, but doxy is not anything to be afraid of, from what I hear, and it may do you some good. Dunno. One thing you will learn from Lyme is to accept the ambiguities and plow ahead when it seems reasonable.)
If Burrascano says 200mg/twice a day, then I might do that, if you'll see the LLMD before you run out ... I really don't know. I'm not one to freelance on meds, and it sounds like you aren't either -- but sometimes you gotta do what you gotta do.
I don't think doxy is usually effective on the co-infections. I had Lyme and babesiosis, and the meds were completely different for each one. (And .. my doc didn't give me doxy at all. There are few predictably predictables in Lyme and the co-infections. It's not like the rest of medicine that seems to settled; much is still being learned about Lyme, like the early days of AIDS.)
You say, "I looked up how to tell symptoms in young children, and they are so difficult to tell—increased irritability? Really?" I had to laugh. You are SO right. I like your attitude, and that will take you a long way in dealing with Lyme.
I would also do as you are, calling the LLMD and getting put on the cancellation list. Once you are a patient of his/hers, it will perhaps make it easier to wedge your kids into the doc's schedule for evaluation and testing if you decide to do that. Kids can be hearty, so don't worry. Do what you can. It will be okay.
You say, "Why wouldn’t a pediatrician want to be sure? The test is much less expensive than the cost of health care down the road if it is untreated." THAT is the million dollar question. It's just where we are with Lyme vs the medical community; eventually they'll wise up after enough of them and their own families get sick. In the meantime, thank heaven for LLMDs.
Your primary doc may never get on board with the LLMD approach to Lyme diagnosis and treatment, so you may have to agree to disagree and just let the conversation pass. On the other hand, he may learn something from your experience if he's really a smart guy. Lyme has a funny way of scaring the wits out of nonLLMDs who are asked to walk on the wild side and go against the IDSA, tho, so don't hold your breath.
We're always open for rants -- will look forward to your updates. Let us know how we can help.
------------------------------------
PS: If you have the time and the inclination, there is a documentary called "Under Our Skin" made a couple of years ago. I think (?) it's on YouTube (or somewhere on the net) and explains well what Lyme is all about in how it affects your life (tho is not focussed on the medical/scientific side). It follows the stories of a few people with Lyme. My only objection to it when I saw it was that it showed people with some very bad symptoms that I thought were overly scary, so if you watch it, don't be afraid that you will become like that; it doesn't happen to everyone nor even to many or most of us. Lyme interferes with daily life but does not usually make us bedridden. The movie can be useful to explain to uncomprehending family and close friends what you are going through, tho.
You say, "I feel like I'm in a weird movie." That is an excellent description of having Lyme and having to *deal* with Lyme and the medical community.
Keep us posted!
Hi, ---- I'm glad to see you received more information. (In case you haven't figured this out for yourself already, Lyme and it's co-infections, and it's treatments are not something that can be neatly summed up in a few paragraphs! (grin)
Adding in the political warring going on with it just makes it crazy-making.
I received the name of your doctor (thanks for trusting me) and checking around I liked what I read.
BTW---- I don't necessarily believe what sites like Vitals.com, RateMDs etc report. They may be correct and in your doctor's case probably are. People liked him a lot. But I personally know of one doctor who used fake names and different IPs to give HIMSELF good reviews on those sites!!!!!!! He eventually got caught but----------I see him referred to here several times as a good resource and have to zip my mouth shut.
The testing at Stony Brook seems to be o.k. but the warning is to ask for ALL Western Blot bands to be tested for. As one person, experienced in the testing at S.B. said:
"The doctor ordering the test from Stony Brook has to specify that Stony Brook reports the non-CDC specific bands."
I'm going to ask you to believe (a stranger) that the dosing of doxycycline at 300 or 400 mg. a day is the norm. Almost all of have had that protocol and it certainly lasts more than a month!!!! (Unless you go in with the tick still attached and a red ring around it! Then a month might do it. ---- sarcasm used there for effect!)
But don't believe just me or anyone else here. Read Burrascano. Read the ILADS guidelines found at http://www.ilads.org/files/ILADS_Guidelines.pdf
Doxy won't be given to children because of the problem of it staining their teeth. Only after about 14 or 15 of age or when all the adult teeth are fully emerged are children given doxy.
Adults (UNLESS THERE ARE MEDICAL CONDITIONS THAT FORBID IT) take doxy all the time, high doses and sometimes for months and months at a time.
Doxycycline (any antibiotic) will produce a Herxheimer reaction at first, normally.
People feel worse and stop the med. Wrong decision. Your doctor will explain all that to you. I always became slightly nauseated for the first few weeks but that went away. Others might get sicker, but that usually goes away.
People have to stay covered up in sunlight while on doxy. Long sleeved shirts, long pants, sun hat etc. Each person is different in how much sun they can tolerate while on doxy.
I never took an antibiotic in my live until Lyme arrived. I would be dead now if I hadn't started. The fact that I'm chronic is probably due to the fact that, like so many of us, I couldn't find a doctor to treat me. If I had started earlier I might be feeling fairly good now. Please don't delay. You're already way ahead of the game, having found a good doctor----- so listen to his advice.
Please read Cure Unknown by Pam Weintraub. It's the best few bucks you'll spend to get the best information by woman who's family had Lyme and who, by nature of her ability to write plus her expertise with science, wrote this book that is a must for everyone.
Here is her web site:
http://www.astralgia.com/
Adding in the political warring going on with it just makes it crazy-making.
I received the name of your doctor (thanks for trusting me) and checking around I liked what I read.
BTW---- I don't necessarily believe what sites like Vitals.com, RateMDs etc report. They may be correct and in your doctor's case probably are. People liked him a lot. But I personally know of one doctor who used fake names and different IPs to give HIMSELF good reviews on those sites!!!!!!! He eventually got caught but----------I see him referred to here several times as a good resource and have to zip my mouth shut.
The testing at Stony Brook seems to be o.k. but the warning is to ask for ALL Western Blot bands to be tested for. As one person, experienced in the testing at S.B. said:
"The doctor ordering the test from Stony Brook has to specify that Stony Brook reports the non-CDC specific bands."
I'm going to ask you to believe (a stranger) that the dosing of doxycycline at 300 or 400 mg. a day is the norm. Almost all of have had that protocol and it certainly lasts more than a month!!!! (Unless you go in with the tick still attached and a red ring around it! Then a month might do it. ---- sarcasm used there for effect!)
But don't believe just me or anyone else here. Read Burrascano. Read the ILADS guidelines found at http://www.ilads.org/files/ILADS_Guidelines.pdf
Doxy won't be given to children because of the problem of it staining their teeth. Only after about 14 or 15 of age or when all the adult teeth are fully emerged are children given doxy.
Adults (UNLESS THERE ARE MEDICAL CONDITIONS THAT FORBID IT) take doxy all the time, high doses and sometimes for months and months at a time.
Doxycycline (any antibiotic) will produce a Herxheimer reaction at first, normally.
People feel worse and stop the med. Wrong decision. Your doctor will explain all that to you. I always became slightly nauseated for the first few weeks but that went away. Others might get sicker, but that usually goes away.
People have to stay covered up in sunlight while on doxy. Long sleeved shirts, long pants, sun hat etc. Each person is different in how much sun they can tolerate while on doxy.
I never took an antibiotic in my live until Lyme arrived. I would be dead now if I hadn't started. The fact that I'm chronic is probably due to the fact that, like so many of us, I couldn't find a doctor to treat me. If I had started earlier I might be feeling fairly good now. Please don't delay. You're already way ahead of the game, having found a good doctor----- so listen to his advice.
Please read Cure Unknown by Pam Weintraub. It's the best few bucks you'll spend to get the best information by woman who's family had Lyme and who, by nature of her ability to write plus her expertise with science, wrote this book that is a must for everyone.
Here is her web site:
http://www.astralgia.com/
Thanks so much for your reply. I’m going ahead with the wait for the LLMD. I do have a prescription for the doxycycline, but I’m nervous to take it if it might not help, or might not be the right dose. I’m one of those people who avoid all medications unless absolutely necessary, and I know that doxycycline is a strong antibiotic. I looked at Dr. Burrascano’s suggestions for treatment, and it sounds like I would need a higher dose (I have the Rx for 100mg 2x daily for 30 days). I understand that this is not forum of doctors, but I wanted to see what the experience of others was….it is all so confusing. From what Dr. Burrascano wrote, if I take the doxycycline, and the dose is wrong, and I do have Lyme, it could actually do more harm than good. Am I reading what he wrote correctly? This is why I’ve been afraid to start the doxycycline.
It is frustrating that there is something on my Lyme test, but nothing to accurately tell me if it is Lyme. Or could it be one of the co-infections and not Lyme? If I take the doxycycline, maybe it will eradicate whatever it is. And even more frustrating that there are so many “professional” medical opinions out there. I’m hoping to hear from the LLMD soon so that maybe I don’t have to independently decide to take this medicine or not.
I am so grateful to at least have found people who can understand what I’m talking about. I work in the medical field, and I’ve learned to question everything and understand what is going on.
And an extra thank you for the information about children. This has me upset more than anything else. My pediatrician refused to test without the presence of a rash. I looked up how to tell symptoms in young children, and they are so difficult to tell—increased irritability? Really? A five and four year old get increasingly irritable every time they hear the word “no”, so how am I supposed to be able to gauge that? They cry a lot, and get upset a lot, at that age. The fact is that we have all been bitten by deer ticks picked up from the same location, this is Long Island where Lyme is all over, and one of those bitten has confirmed Lyme with the second having potential Lyme. Why wouldn’t a pediatrician want to be sure? The test is much less expensive than the cost of health care down the road if it is untreated.
Sooo….I will keep you posted. I am going to follow up with the LLMD on Monday, and ask to be notified if there are any cancellations. Hopefully there will be further testing. I really get along well with my primary doctor, but I know absolutely that I don’t have arthritis, and I don’t need muscle relaxers.
And I find it angering and mind-boggling that such an obvious issue can be ignored by the medical community at large; understandable for all to have their opinions, but treatment options should be available and there shouldn’t be such a dark cloud surrounding this. That is what I am finding. I feel like I’m in a weird movie.
Thank you again. Really. I’m glad I’ve found here. And I apologize for the long rant….just trying to make sense of everything.
It is frustrating that there is something on my Lyme test, but nothing to accurately tell me if it is Lyme. Or could it be one of the co-infections and not Lyme? If I take the doxycycline, maybe it will eradicate whatever it is. And even more frustrating that there are so many “professional” medical opinions out there. I’m hoping to hear from the LLMD soon so that maybe I don’t have to independently decide to take this medicine or not.
I am so grateful to at least have found people who can understand what I’m talking about. I work in the medical field, and I’ve learned to question everything and understand what is going on.
And an extra thank you for the information about children. This has me upset more than anything else. My pediatrician refused to test without the presence of a rash. I looked up how to tell symptoms in young children, and they are so difficult to tell—increased irritability? Really? A five and four year old get increasingly irritable every time they hear the word “no”, so how am I supposed to be able to gauge that? They cry a lot, and get upset a lot, at that age. The fact is that we have all been bitten by deer ticks picked up from the same location, this is Long Island where Lyme is all over, and one of those bitten has confirmed Lyme with the second having potential Lyme. Why wouldn’t a pediatrician want to be sure? The test is much less expensive than the cost of health care down the road if it is untreated.
Sooo….I will keep you posted. I am going to follow up with the LLMD on Monday, and ask to be notified if there are any cancellations. Hopefully there will be further testing. I really get along well with my primary doctor, but I know absolutely that I don’t have arthritis, and I don’t need muscle relaxers.
And I find it angering and mind-boggling that such an obvious issue can be ignored by the medical community at large; understandable for all to have their opinions, but treatment options should be available and there shouldn’t be such a dark cloud surrounding this. That is what I am finding. I feel like I’m in a weird movie.
Thank you again. Really. I’m glad I’ve found here. And I apologize for the long rant….just trying to make sense of everything.
Welcome to MedHelp --
I think you are asking all the right questions, and you are accurately perceiving the confusion about Lyme that exists in the medical community. Good for you for plowing ahead. It's what I would do -- and is what I did, to good effect.
This time of year especially, a one month wait for a Lyme doc appointment is not excessive. You can also ask them to call you if there is a cancellation.
I'm not on the East Coast, but Stonybrook (I believe I've read) has a good reputation when it comes to Lyme testing. The two tests you had are the usual, first-tier testing: ELISA and Western blot. They are helpful if positive, but a negative or equivocal result is not necessarily reliable. Nevertheless, they are usually the first level of testing when Lyme is suspected.
ELISA sounds like it was positive. The positive W.blot results on bands 41, 30 and 45 mean:
41 -- indicates the presence of spirochetes (spiral-shaped bacteria), which can be Lyme but can be other things too.
30 -- unknown; common in some Lyme strains esp in Europe and California; cross-reacts with some viruses
45 -- cross-reactive with all Borrelia, which is the larger family of bacteria that Lyme belongs to.
(IgM antibodies are produced by the immune system early after an infection; IgG antibodies are produced later in an infection. Both are useful data.)
So, the W.blot results are not (to my not-medically-trained eye) clearly Lyme disease, but these tests are *notoriously* inaccurate. Why? Because they are looking for your immune system's reaction to Lyme bacteria. The problem is that Lyme suppresses the immune system, so the bacteria can well be there but the immune system is not reacting, so the tests are not positive or sufficiently positive.
A Lyme specialist is likely to use a different test entirely, a polymerase chain reaction (PCR) test, which looks for direct evidence of infection, that being the DNA of Lyme bacteria in your blood. I would anticipate that the doc you go see will run that test.
A Lyme specialist (called for ease of reference by patients an 'LLMD', short for 'Lyme-literate medical doctor') can be of any medical speciality or none, the important qualification being that they know Lyme is a clinical diagnosis, based on history and symptoms, aided by test results, and NOT solely a laboratory diagnosis -- because of the notorious inaccuracy of the ELISA/W.blot tests.
Sadly, nonLLMDs (meaning most of the medical community) think that the ELISA/W.blot tests are fine and scoff at the more advanced PCR testing. A lab called IGeneX is the usual (and perhaps only) lab to offer the PCR testing, and you may hear grousing about IGeneX from nonLLMDs ... but it's only out of ignorance. There is a bad split in the medical community that you are already encountering, and from personal experience, I think you are doing the right thing. Lyme is treatable and curable, and the sooner in the infection the better. Lyme is also endemic in the Northeastern US, and in fact is everywhere tho not always recognized.
The laundry list of 'maybe this, maybe that' that you got from your primary doc is typical. Lyme is simply not on the doc's radar, because the Infectious Disease Society of America (IDSA), the main voluntary group for infectious disease docs in the US, is dominated by the MDs who first 'discovered' Lyme a few decades ago, and their assumptions that Lyme is rare, hard to get and easy to cure still hold sway in most of medicine. Hence your primary care doc's reaction.
ILADS (International Lyme and Associated Disease Society) is the counterpoint to the IDSA, and the docs who understand Lyme as the potentially devastating disease that it is tend toward the ILADS position and are often members themselves.
Caution however that it is a developing field, and even some ILADS docs are a bit far out there for my taste. It's bound to happen in a rapidly developing field, but it means the patient is still the first line of defense against inadequate or wacky care. The good news is that if you get a dud doc the first time out, you stand a good chance of getting a better one on the next try. If you will keep us posted here on how your upcoming appointment goes, what tests were ordered, and so on, we can give you comments on how that stacks up with our own experiences and understanding of what a good LLMD will do to diagnose and treat.
Doxycycline is the golden oldie treatment for Lyme, but it is effective only in the very early stages of the infection. You may have caught it in time, and your Lyme doc will gauge that for you. What nonLLMDs do not usually look out for are co-infections, which are separate infections unrelated to Lyme that perhaps half the Lyme ticks also carry. I personally had Lyme and babesiosis, which is similar to malaria. They are all treatable, but it takes a good LLMD to parse the symptoms and know what to test for and then how to treat, because the different infections often need different meds.
As to your daughters: my daughter and I never saw a tick or had a rash, but I was terribly ill, which took me through 20 docs before one finally ran a Lyme test on me, which was positive. She denied I could have Lyme, but I took the test result and found an LLMD. I insisted that my daughter be tested as well, since we had been all the same places, and she had been at rustic summer camps several times (aka Tick Heaven). She protested that she was fine, but she tested positive for Lyme and babesia also; after treatment was done, she confessed to not having realized how run down and constantly tired she was before treatment. Neither of us saw a tick or a rash. Ever. And we are fine now, several years post-treatment.
Your pediatrician may be wise to the ways of Lyme and be willing to test, but the questions arise: will he ignore a positive test? will he required a rash and a tick to have been found? will he treat with more than a short course of doxycycline? Given my own experience, I would suggest your children be tested by your Lyme doc. Your pediatrician, even if he tests, will likely use the wobbly W.blot and ELISA tests that you had.
ILADS [dot] org has much information, most of it pitched at MDs, but still accessible and understandable by laymen. Burrascano's guidelines there are a bit rambling, having been added onto over the years, but you might find them interesting.
Sorry for the long exposition. You are doing what I would do, and asking all the right questions. Please let us know if we can help further. Best wishes to you all --
I think you are asking all the right questions, and you are accurately perceiving the confusion about Lyme that exists in the medical community. Good for you for plowing ahead. It's what I would do -- and is what I did, to good effect.
This time of year especially, a one month wait for a Lyme doc appointment is not excessive. You can also ask them to call you if there is a cancellation.
I'm not on the East Coast, but Stonybrook (I believe I've read) has a good reputation when it comes to Lyme testing. The two tests you had are the usual, first-tier testing: ELISA and Western blot. They are helpful if positive, but a negative or equivocal result is not necessarily reliable. Nevertheless, they are usually the first level of testing when Lyme is suspected.
ELISA sounds like it was positive. The positive W.blot results on bands 41, 30 and 45 mean:
41 -- indicates the presence of spirochetes (spiral-shaped bacteria), which can be Lyme but can be other things too.
30 -- unknown; common in some Lyme strains esp in Europe and California; cross-reacts with some viruses
45 -- cross-reactive with all Borrelia, which is the larger family of bacteria that Lyme belongs to.
(IgM antibodies are produced by the immune system early after an infection; IgG antibodies are produced later in an infection. Both are useful data.)
So, the W.blot results are not (to my not-medically-trained eye) clearly Lyme disease, but these tests are *notoriously* inaccurate. Why? Because they are looking for your immune system's reaction to Lyme bacteria. The problem is that Lyme suppresses the immune system, so the bacteria can well be there but the immune system is not reacting, so the tests are not positive or sufficiently positive.
A Lyme specialist is likely to use a different test entirely, a polymerase chain reaction (PCR) test, which looks for direct evidence of infection, that being the DNA of Lyme bacteria in your blood. I would anticipate that the doc you go see will run that test.
A Lyme specialist (called for ease of reference by patients an 'LLMD', short for 'Lyme-literate medical doctor') can be of any medical speciality or none, the important qualification being that they know Lyme is a clinical diagnosis, based on history and symptoms, aided by test results, and NOT solely a laboratory diagnosis -- because of the notorious inaccuracy of the ELISA/W.blot tests.
Sadly, nonLLMDs (meaning most of the medical community) think that the ELISA/W.blot tests are fine and scoff at the more advanced PCR testing. A lab called IGeneX is the usual (and perhaps only) lab to offer the PCR testing, and you may hear grousing about IGeneX from nonLLMDs ... but it's only out of ignorance. There is a bad split in the medical community that you are already encountering, and from personal experience, I think you are doing the right thing. Lyme is treatable and curable, and the sooner in the infection the better. Lyme is also endemic in the Northeastern US, and in fact is everywhere tho not always recognized.
The laundry list of 'maybe this, maybe that' that you got from your primary doc is typical. Lyme is simply not on the doc's radar, because the Infectious Disease Society of America (IDSA), the main voluntary group for infectious disease docs in the US, is dominated by the MDs who first 'discovered' Lyme a few decades ago, and their assumptions that Lyme is rare, hard to get and easy to cure still hold sway in most of medicine. Hence your primary care doc's reaction.
ILADS (International Lyme and Associated Disease Society) is the counterpoint to the IDSA, and the docs who understand Lyme as the potentially devastating disease that it is tend toward the ILADS position and are often members themselves.
Caution however that it is a developing field, and even some ILADS docs are a bit far out there for my taste. It's bound to happen in a rapidly developing field, but it means the patient is still the first line of defense against inadequate or wacky care. The good news is that if you get a dud doc the first time out, you stand a good chance of getting a better one on the next try. If you will keep us posted here on how your upcoming appointment goes, what tests were ordered, and so on, we can give you comments on how that stacks up with our own experiences and understanding of what a good LLMD will do to diagnose and treat.
Doxycycline is the golden oldie treatment for Lyme, but it is effective only in the very early stages of the infection. You may have caught it in time, and your Lyme doc will gauge that for you. What nonLLMDs do not usually look out for are co-infections, which are separate infections unrelated to Lyme that perhaps half the Lyme ticks also carry. I personally had Lyme and babesiosis, which is similar to malaria. They are all treatable, but it takes a good LLMD to parse the symptoms and know what to test for and then how to treat, because the different infections often need different meds.
As to your daughters: my daughter and I never saw a tick or had a rash, but I was terribly ill, which took me through 20 docs before one finally ran a Lyme test on me, which was positive. She denied I could have Lyme, but I took the test result and found an LLMD. I insisted that my daughter be tested as well, since we had been all the same places, and she had been at rustic summer camps several times (aka Tick Heaven). She protested that she was fine, but she tested positive for Lyme and babesia also; after treatment was done, she confessed to not having realized how run down and constantly tired she was before treatment. Neither of us saw a tick or a rash. Ever. And we are fine now, several years post-treatment.
Your pediatrician may be wise to the ways of Lyme and be willing to test, but the questions arise: will he ignore a positive test? will he required a rash and a tick to have been found? will he treat with more than a short course of doxycycline? Given my own experience, I would suggest your children be tested by your Lyme doc. Your pediatrician, even if he tests, will likely use the wobbly W.blot and ELISA tests that you had.
ILADS [dot] org has much information, most of it pitched at MDs, but still accessible and understandable by laymen. Burrascano's guidelines there are a bit rambling, having been added onto over the years, but you might find them interesting.
Sorry for the long exposition. You are doing what I would do, and asking all the right questions. Please let us know if we can help further. Best wishes to you all --
I've read your post and have SO many things to ask of you and SO much information to give you as food for thought!
I have to pick someone up at the airport and can't do that right now, but later.
I'm sure others will pick up on your thread too.
In the meantime, if you feel comfortable with it, would you send me a message with the name(s) of the 'llmd' you will seeing. We can't mention docs names here, sigh, but the info on your message will be kept confidential.
Just hover your mouse over my screen name and a link will show, in blue, to send me a message. If you feel comfortable doing that.
I have to pick someone up at the airport and can't do that right now, but later.
I'm sure others will pick up on your thread too.
In the meantime, if you feel comfortable with it, would you send me a message with the name(s) of the 'llmd' you will seeing. We can't mention docs names here, sigh, but the info on your message will be kept confidential.
Just hover your mouse over my screen name and a link will show, in blue, to send me a message. If you feel comfortable doing that.
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