Aa
LLMD in or near NYC
Hi, I was visiting my doc's for a routine exam and bloodwork. The PA asked if she wanted me to go over my old blood work. She did. Among those papers in Aug 2010 I had requested a lyme test because I found a tick in my neck a month earlier. THAT tick turned out to be a wood tick, not engorged, and easily removed, so it hadn't been there long.
The PA read that the Ig that tested for new, acute infections was negative BUT, there was another Ig that said "reactive." She said "Oh, that's for old infections. We don't concern ourselves with that."
WhaaaaaaaaAAAAAAAA???!?!?!?
So um, er, I am going to make another appt to ream out my doctor and get re-tested I suppose. If this means I have had lyme for years then I am doing really well compared to what often happens to folks, but I don't want to mess around! What burns me up is that when I called for test results back then, no one ever mentioned the "reactive" result. I mean, it's not as if I was known to them as an established lyme patient.
I THINK this was an ELISA test but don't quote me on it. I should have asked more Qs then and there but it was still hitting me. The CanLyme website said false positives are rare. True? False?
Anyway, if anyone knows of a LLMD my way I'd love to know. I live in NYC.
The PA read that the Ig that tested for new, acute infections was negative BUT, there was another Ig that said "reactive." She said "Oh, that's for old infections. We don't concern ourselves with that."
WhaaaaaaaaAAAAAAAA???!?!?!?
So um, er, I am going to make another appt to ream out my doctor and get re-tested I suppose. If this means I have had lyme for years then I am doing really well compared to what often happens to folks, but I don't want to mess around! What burns me up is that when I called for test results back then, no one ever mentioned the "reactive" result. I mean, it's not as if I was known to them as an established lyme patient.
I THINK this was an ELISA test but don't quote me on it. I should have asked more Qs then and there but it was still hitting me. The CanLyme website said false positives are rare. True? False?
Anyway, if anyone knows of a LLMD my way I'd love to know. I live in NYC.
That must be very frustrating! From what I've read on the IDSA and CDC websites, IgM antibodies represent antibodies currently fighting an infection. IgG antibodies are more protective. There is an assumption that a negative IgM Western Blot with a positive IgG Western Blot suggests an "old" infection. This also assumes that after treatment, your IgG WB could be positive for years to come even after you are cured.
However, they also say that your body will convert from making IgM to IgG antibodies about a month from when symptoms start. That's why the official testing protocol for the Western Blot says to ignore the IgM results and look only at the IgG if you've been symptomatic more than a month.
This seems conflicting to me. This is saying that you'll test with the same IgG WB both before and well after treatment. A critical question here would be, "Have you been treated for a prior Lyme infection?"
My immune system did not perform as all as it is "supposed" to, and years after my infection started, when I was at my worst, my IgM WB showed 3 bands (but not the 'right' ones to be CDC positive) and my IgG WB showed 1 indeterminant and 1 positive band (negative by everyone's standards).
In reality, Lyme is immunosuppressive, and not everyone's immune system responds to Lyme in the same way. I think it's great you want to see an LLMD.
However, they also say that your body will convert from making IgM to IgG antibodies about a month from when symptoms start. That's why the official testing protocol for the Western Blot says to ignore the IgM results and look only at the IgG if you've been symptomatic more than a month.
This seems conflicting to me. This is saying that you'll test with the same IgG WB both before and well after treatment. A critical question here would be, "Have you been treated for a prior Lyme infection?"
My immune system did not perform as all as it is "supposed" to, and years after my infection started, when I was at my worst, my IgM WB showed 3 bands (but not the 'right' ones to be CDC positive) and my IgG WB showed 1 indeterminant and 1 positive band (negative by everyone's standards).
In reality, Lyme is immunosuppressive, and not everyone's immune system responds to Lyme in the same way. I think it's great you want to see an LLMD.
Another thought... you mention that your test might have been an ELISA, whereas my previous comment spoke to the Western Blot.
I was negative on an IFA screen, another screening test like the ELISA. Many LLMDs have said a good half of their patients have tested negative on these screening tests. The Western Blot is a better indicator, and from what I've heard, rarely positive. Some of the bands are Borrelia specific and highly indicative of infection. The screening test can occasionally be a false positive due to different infections.
It sounds like a Western Blot would be a good next step for you.
I was negative on an IFA screen, another screening test like the ELISA. Many LLMDs have said a good half of their patients have tested negative on these screening tests. The Western Blot is a better indicator, and from what I've heard, rarely positive. Some of the bands are Borrelia specific and highly indicative of infection. The screening test can occasionally be a false positive due to different infections.
It sounds like a Western Blot would be a good next step for you.
A few comments, fwiw:
"Aug 2010 I had requested a lyme test because I found a tick in my neck a month earlier. THAT tick turned out to be a wood tick, not engorged, and easily removed, so it hadn't been there long."
-- Umm, I haven't read anywhere that wood ticks can't carry Lyme etc. The main vector (carrier) may be the tiny deer ticks, but somebody has to explain to me why other kinds of ticks can't also be carriers. (For example: I got a cracking good case of Ehrlichiosis, which is sometimes a co-infection of Lyme, from the bite of a big ole DOG tick.) While deer ticks may be a primary vector of Lyme, I haven't read anywhere that it is the ONLY vector ... and in fact mosquitoes may carry Lyme too. Why not?
And about how long the tick was attached: I have looked and never found an explanation of where this rule comes from that "the tick has to be attached for at least X hours/days before you can get infected". You can get malaria from a single mosquito bite, and mosquitos don't hang around for long when they're biting.
So maybe the doc who told you 'wrong tick, not attached long enough' was not Lyme savvy?
"The PA read that the Ig that tested for new, acute infections was negative BUT, there was another Ig that said "reactive." She said "Oh, that's for old infections. We don't concern ourselves with that."
-- I absolutely agree with you on this point.
"So um, er, I am going to make another appt to ream out my doctor and get re-tested I suppose."
-- Why not find a new doc?
"If this means I have had lyme for years then I am doing really well compared to what often happens to folks, but I don't want to mess around!"
-- I suspect there are indeed subclinical cases of Lyme everywhere ... when I got really really sick, and after my 20th doc finally got a Lyme test result in my hand that was mildly positive, I went to an LLMD for the first time and learned I had Lyme and babesiosis. I had my family tested to, since we had all been the same places back East on a trip, and whaddaya know, positive for Lyme and babesiosis. I was the only one who was terribly, obviously ill, but they had been feeling kind of dragged out and just thought it was overwork, but it had been going on for a long time, and I had strange little symptoms like sore soles of my feet in the mornings. Turns out that's a Lyme symptom that some people get.
The point of this is: you may have had a subclinical case of Lyme for a long time, but that doesn't mean it shouldn't be treated: that for a doc to say. Not only a reinfection can cause problems like I had, but also a sudden life stress that causes the immune system to not be able to fight back as hard as it has been. I'd get treated.
"What burns me up is that when I called for test results back then, no one ever mentioned the "reactive" result. I mean, it's not as if I was known to them as an established lyme patient."
-- Agreed.
"I THINK this was an ELISA test but don't quote me on it. I should have asked more Qs then and there but it was still hitting me. The CanLyme website said false positives are rare. True? False?"
-- I think that's accurate.
"Anyway, if anyone knows of a LLMD my way I'd love to know. I live in NYC."
-- Good for you. ILADS, the main voluntary group for LLMDs, apparently has a referral function at:
contact [at] ilads [dot] org
Also someone else here recommend a doc recently, one who is high up in ILADS. I'll send you a private message with that name.
Good luck, and good hunting --
"Aug 2010 I had requested a lyme test because I found a tick in my neck a month earlier. THAT tick turned out to be a wood tick, not engorged, and easily removed, so it hadn't been there long."
-- Umm, I haven't read anywhere that wood ticks can't carry Lyme etc. The main vector (carrier) may be the tiny deer ticks, but somebody has to explain to me why other kinds of ticks can't also be carriers. (For example: I got a cracking good case of Ehrlichiosis, which is sometimes a co-infection of Lyme, from the bite of a big ole DOG tick.) While deer ticks may be a primary vector of Lyme, I haven't read anywhere that it is the ONLY vector ... and in fact mosquitoes may carry Lyme too. Why not?
And about how long the tick was attached: I have looked and never found an explanation of where this rule comes from that "the tick has to be attached for at least X hours/days before you can get infected". You can get malaria from a single mosquito bite, and mosquitos don't hang around for long when they're biting.
So maybe the doc who told you 'wrong tick, not attached long enough' was not Lyme savvy?
"The PA read that the Ig that tested for new, acute infections was negative BUT, there was another Ig that said "reactive." She said "Oh, that's for old infections. We don't concern ourselves with that."
-- I absolutely agree with you on this point.
"So um, er, I am going to make another appt to ream out my doctor and get re-tested I suppose."
-- Why not find a new doc?
"If this means I have had lyme for years then I am doing really well compared to what often happens to folks, but I don't want to mess around!"
-- I suspect there are indeed subclinical cases of Lyme everywhere ... when I got really really sick, and after my 20th doc finally got a Lyme test result in my hand that was mildly positive, I went to an LLMD for the first time and learned I had Lyme and babesiosis. I had my family tested to, since we had all been the same places back East on a trip, and whaddaya know, positive for Lyme and babesiosis. I was the only one who was terribly, obviously ill, but they had been feeling kind of dragged out and just thought it was overwork, but it had been going on for a long time, and I had strange little symptoms like sore soles of my feet in the mornings. Turns out that's a Lyme symptom that some people get.
The point of this is: you may have had a subclinical case of Lyme for a long time, but that doesn't mean it shouldn't be treated: that for a doc to say. Not only a reinfection can cause problems like I had, but also a sudden life stress that causes the immune system to not be able to fight back as hard as it has been. I'd get treated.
"What burns me up is that when I called for test results back then, no one ever mentioned the "reactive" result. I mean, it's not as if I was known to them as an established lyme patient."
-- Agreed.
"I THINK this was an ELISA test but don't quote me on it. I should have asked more Qs then and there but it was still hitting me. The CanLyme website said false positives are rare. True? False?"
-- I think that's accurate.
"Anyway, if anyone knows of a LLMD my way I'd love to know. I live in NYC."
-- Good for you. ILADS, the main voluntary group for LLMDs, apparently has a referral function at:
contact [at] ilads [dot] org
Also someone else here recommend a doc recently, one who is high up in ILADS. I'll send you a private message with that name.
Good luck, and good hunting --
Oops, sorry.. I have Lyme brain today. Corrections on my two posts above...
I meant, "I think it's great that you're GOING to see an LLMD."
And... Western Blots are rarely FALSE positive.
I had recurring low grade disease for over 4 1/2 years. I would have strange bouts of overwhelming fatigue, brain fog, and headache that would last for 1-3 weeks and then I'd get over it. I'd get them every 6-11 months. It felt the same as when I was coming down with mono but without the sore throat. It wasn't until I had two years of chronic stress (thanks to the recession) that I started having chronic and worsening symptoms. From that point it took me 16 months to get diagnosed by an LLMD. I'd like to believe that my immune system was doing a good job holding it off for a while.
I think the variability of the illness is part of what makes it hard to diagnose. I continue to be amazed at how Lyme can be a straight forward infection with a couple of symptoms, or a lurking low grade annoyance, or even a significant multi-systemic disease with a different constellation of symptoms for each patient.
I hope you get the right diagnosis soon!
I meant, "I think it's great that you're GOING to see an LLMD."
And... Western Blots are rarely FALSE positive.
I had recurring low grade disease for over 4 1/2 years. I would have strange bouts of overwhelming fatigue, brain fog, and headache that would last for 1-3 weeks and then I'd get over it. I'd get them every 6-11 months. It felt the same as when I was coming down with mono but without the sore throat. It wasn't until I had two years of chronic stress (thanks to the recession) that I started having chronic and worsening symptoms. From that point it took me 16 months to get diagnosed by an LLMD. I'd like to believe that my immune system was doing a good job holding it off for a while.
I think the variability of the illness is part of what makes it hard to diagnose. I continue to be amazed at how Lyme can be a straight forward infection with a couple of symptoms, or a lurking low grade annoyance, or even a significant multi-systemic disease with a different constellation of symptoms for each patient.
I hope you get the right diagnosis soon!
Jackie, I would have to look all over again but I have read on a number of sites that the deer tick is the vector and not wood ticks, and I have also read on numerous sites where the tick does have to be attached for a certain amount of time for transmission to occur.
I have read anywhere from 12 - 48 hours but more often something more along the lines of 24-36.
I will say that as I removed the tick I did not do it the correct way, because I thought it was a flap of skin and just pulled it off of me! For all I know I squeezed the **** and shot some stomach contents into my system. But I would not expect the IgG antibodies to be the only reactive result just 30 days after THAT particular incident.
As to mosquitoes, etc, sounds theoretically possible. I have seen you have a number of posts here and you clearly come regularly so you must have more experience with this than myself, though I do read ILADS and get their updates. But I'm reluctant to go along with this too speedily because I don't want to become terrified or paranoid. I hope you understand.
I have to say I have felt a bit of disconnect or fatigue often over the last year. Ironically I feel great this morning. I have been so miserable at my job that I choose at this point never to learn anything new here, and so I have felt that the monotony has resulted in my disconnect as a consequence. I don't know what other folks who are positive are feeling as a result of "fog" so I cannot compare, esp when everyone's experience is different.
By the time I see the doc again, I should have my other bloodwork back as well. The blood from before Aug 2010 seemed to have a small presence of "ketones and bacteria" which the PA said can mean an UTI, or sometimes diabetes, but my glucose levels were perfect; not even pre-diabetic. So I have to wonder if that is coincidence or not.
Thank you for the direct email for getting to the LLMD referral service from ILADS. I appreciate that. I sent something under "contact" and then filled out the fields but I will do it your way as well. Truly appreciated! I wish you all well!!!!
I have read anywhere from 12 - 48 hours but more often something more along the lines of 24-36.
I will say that as I removed the tick I did not do it the correct way, because I thought it was a flap of skin and just pulled it off of me! For all I know I squeezed the **** and shot some stomach contents into my system. But I would not expect the IgG antibodies to be the only reactive result just 30 days after THAT particular incident.
As to mosquitoes, etc, sounds theoretically possible. I have seen you have a number of posts here and you clearly come regularly so you must have more experience with this than myself, though I do read ILADS and get their updates. But I'm reluctant to go along with this too speedily because I don't want to become terrified or paranoid. I hope you understand.
I have to say I have felt a bit of disconnect or fatigue often over the last year. Ironically I feel great this morning. I have been so miserable at my job that I choose at this point never to learn anything new here, and so I have felt that the monotony has resulted in my disconnect as a consequence. I don't know what other folks who are positive are feeling as a result of "fog" so I cannot compare, esp when everyone's experience is different.
By the time I see the doc again, I should have my other bloodwork back as well. The blood from before Aug 2010 seemed to have a small presence of "ketones and bacteria" which the PA said can mean an UTI, or sometimes diabetes, but my glucose levels were perfect; not even pre-diabetic. So I have to wonder if that is coincidence or not.
Thank you for the direct email for getting to the LLMD referral service from ILADS. I appreciate that. I sent something under "contact" and then filled out the fields but I will do it your way as well. Truly appreciated! I wish you all well!!!!
Oh BTW, the doctor did not tell me wrong tick, not attached long enough. He never even got into that. I ID'd the tick myself and the doc actually said "You KEPT it?" I mean, wow! What a response! I told him I have always read you keep it if you can. I actually ended up bringing it to my veterinarian who confirmed my ID. I have a great dissecting scope at work and have had some experience in learning what to look for when IDing arachnids, insects, worms, etc, between parasitology in grad school and working for the USDA ( though that is mainly in plant pest ID). So I brought up the Stonybrook med center website which was a huge help.
Never discount your local veterinarian! LOL!
Never discount your local veterinarian! LOL!
Hi Rico!
I'm a bit confused. It reads to me like you say the Western Blot is better but then you say "rarely positive?" If rarely positive, considering how many cases there are out there, I have the impression that would indicate there are false positives???? And that would not be good.
Then you say the screening test can occasionally be false due to different infections. Are you referring again to the Western Blot? I appreciate your help Rico. Could you please clarify? Thank you! :)
I'm a bit confused. It reads to me like you say the Western Blot is better but then you say "rarely positive?" If rarely positive, considering how many cases there are out there, I have the impression that would indicate there are false positives???? And that would not be good.
Then you say the screening test can occasionally be false due to different infections. Are you referring again to the Western Blot? I appreciate your help Rico. Could you please clarify? Thank you! :)
Hah. I mean if "rarely positive" that would mean a lot of false NEGATIVES!
Oy! Excuse me! :)
Oy! Excuse me! :)
BTW Rico, in answer to your big Q, no I have never been treated for a lyme infection.
I wonder how long one can go through life untreated and do as well as I am doing IF I do have Lyme. This is what astounds me.
Now that I think of it though, there is one thing. No one could figure it out back then and it hasn't happened since, but in the fall of 2009, I had the feeling of a weight on top of my head and dizziness, that lasted a total of 7 weeks. As the weeks went on, it got to the point where I was occasionally nauseous.
Then it just stopped. Not long after I had an allergy attack and over the last couple of autumns, on and off, I was getting a sudden allergy attack when the rains came in autumn. I thought perhaps this was some strange allergic reaction as well, or a response to barometric pressure? I never had such responses before but I figured as you age, things can change. I never used to get seasick for example, but over the last 5 years or so, that has become an issue on certain boats.
So who knows? My current doctor ( I've been seeing this guy since I was 12) dismissed the dizzyness saying "you probably think you have a brain tumour right?" I was shocked and said "No! Why would YOU think that?
I just naturally came to a doctor when this would not let up."
All he said was "It WILL."
I always appreciated the fact that he was never an over reactor who would freak patients out or perform too many tests. But lately he's been pissing me off. I will find an LLMD but meanwhile I will likely look for another doc.
I'm not prone to being sue-happy, but if he never informed me of ANY 'reactive" result on paper, I have had a mind to go after him to some extent if someone else deems I should have been treated awhile back. If anyone has ever done this could you email me privately? It's not about greed, it's about showing someone that there are consequences to being so casual about the health of folks who trust you.
I wonder how long one can go through life untreated and do as well as I am doing IF I do have Lyme. This is what astounds me.
Now that I think of it though, there is one thing. No one could figure it out back then and it hasn't happened since, but in the fall of 2009, I had the feeling of a weight on top of my head and dizziness, that lasted a total of 7 weeks. As the weeks went on, it got to the point where I was occasionally nauseous.
Then it just stopped. Not long after I had an allergy attack and over the last couple of autumns, on and off, I was getting a sudden allergy attack when the rains came in autumn. I thought perhaps this was some strange allergic reaction as well, or a response to barometric pressure? I never had such responses before but I figured as you age, things can change. I never used to get seasick for example, but over the last 5 years or so, that has become an issue on certain boats.
So who knows? My current doctor ( I've been seeing this guy since I was 12) dismissed the dizzyness saying "you probably think you have a brain tumour right?" I was shocked and said "No! Why would YOU think that?
I just naturally came to a doctor when this would not let up."
All he said was "It WILL."
I always appreciated the fact that he was never an over reactor who would freak patients out or perform too many tests. But lately he's been pissing me off. I will find an LLMD but meanwhile I will likely look for another doc.
I'm not prone to being sue-happy, but if he never informed me of ANY 'reactive" result on paper, I have had a mind to go after him to some extent if someone else deems I should have been treated awhile back. If anyone has ever done this could you email me privately? It's not about greed, it's about showing someone that there are consequences to being so casual about the health of folks who trust you.
THis is just one of several sites that says dog ticks do not carry lyme.
http://www.stonybrookmedicalcenter.org/pathology/tickpics
Just thought you'd like to see it.
http://www.stonybrookmedicalcenter.org/pathology/tickpics
Just thought you'd like to see it.
Well how about that. This person is near me AND the president of ILADS??!?!
http://www.lymeproject.com/practice/lyme_practice_society.html
He looks scary though, and that mention of "spinal tap" among the types of tests sounds scary too. EEEEK!
So much of his site sounds depressing, as if you are destined to be debiliated and need counseling. I don't feel that way.
I appreciate research and I don't want to muck around, but will I become a science project to this guy? All I know is right now I feel fine enough so that I know, that if this were the worst I ever felt for my lifetime, it would be fine. Of course, we just don't know what the future brings.
I was looking at other posts on this forum and ran across some saying not to be scared, that all the listings about the worst of the worst happening isn't destiny for everyone. That was good to read. Though I do feel strongly for those who suffer greatly. Long before I visited my doc last week, I was a big advocate for bringing more attention to lyme than it has been getting.
http://www.lymeproject.com/practice/lyme_practice_society.html
He looks scary though, and that mention of "spinal tap" among the types of tests sounds scary too. EEEEK!
So much of his site sounds depressing, as if you are destined to be debiliated and need counseling. I don't feel that way.
I appreciate research and I don't want to muck around, but will I become a science project to this guy? All I know is right now I feel fine enough so that I know, that if this were the worst I ever felt for my lifetime, it would be fine. Of course, we just don't know what the future brings.
I was looking at other posts on this forum and ran across some saying not to be scared, that all the listings about the worst of the worst happening isn't destiny for everyone. That was good to read. Though I do feel strongly for those who suffer greatly. Long before I visited my doc last week, I was a big advocate for bringing more attention to lyme than it has been getting.
I hear what you are saying about what kind of tick carries Lyme and how long it has to be attached. That is what some of the literature says.
And if you're a veterinarian (did I pick that up correctly?) then you are definitely medically oriented ... which means I would ask you to be skeptical of what the medical profession says on these points. The early work done by Steere Wormser et al. is quite old at this point and was meant for epidemiological surveillance purposes, so the bar was set very high to affirm that someone has Lyme: tick seen, right kind of tick, tick attached X hours, EM rash, endemic area, etc. This has not allowed an expansion of the case definition, and these epidemiological standards were never meant to be applied to clinical medicine.
Even the CDC has finally walked back on those tick/rash/etc. requirements (just recently), and there is increasing understanding that the initial views of Lyme need updating. Steere et al. are still high up in the medical hierarchy at the IDSA, tho, and orthodoxy rules.
I understand the need for specialists to be the authorities that others rely on, but in the case of Lyme, it's been overdone. Given that you are now on the patient side of Lyme, I'd encourage you to put on a big ole 'skeptical' hat and walk on the wild side to increase the breadth of data you are gathering. Your well-being is at stake, and a little private heresy is in order as a result. IMO.
I think Ricobord reversed (elsewhere on this site) the statement you mention above -- it was stated the opposite of what it should have been.
Re spinal tap ... read up on it, because it's my understanding that it is NOT particularly diagnostic of Lyme because the Bb don't tend to frolic in spinal fluid. Blood tests through IGeneX or other specialty labs plus a SPECT scan are, to my reading, state of the art for diagnosis.
And IIRC, Stonybrook is no longer top choice for Lyme work.
Also you should be checked for suspected coinfections, and if your doc isn't taking that into account, that's a tad disturbing.
Hey, I kept the dog tick that gave me Ehrlichiosis. It and I both tested positive. All the infectious disease doc would say was "It DOES look rather buggy, doesn't it." Full stop, refused to treat, despite tick, bite, widespread petechial hemorrhaging, etc. These guys are so far into orthodoxy that they can't think straight. I know it's hard for a fellow scientist to think these guys are willfully ignorant, but it happens. You have to look out for yourself in all this, so: do it. Better than being chronically ill. Yes, your symptoms may be in abeyance currently, but they'll be back, when you least expect it. Don't fool around with Lyme. It's not kidding.
About suing a doc who fails to diagnose and treat, it's a nonstarter. They will just hold up the current [IDSA] standard of care as their shield, and you'd lose. Focus on diagnosis and treatment, and in spreading the truth. Given your scientific background, you are perfectly positioned to do so.
Let us know how it goes. J.
And if you're a veterinarian (did I pick that up correctly?) then you are definitely medically oriented ... which means I would ask you to be skeptical of what the medical profession says on these points. The early work done by Steere Wormser et al. is quite old at this point and was meant for epidemiological surveillance purposes, so the bar was set very high to affirm that someone has Lyme: tick seen, right kind of tick, tick attached X hours, EM rash, endemic area, etc. This has not allowed an expansion of the case definition, and these epidemiological standards were never meant to be applied to clinical medicine.
Even the CDC has finally walked back on those tick/rash/etc. requirements (just recently), and there is increasing understanding that the initial views of Lyme need updating. Steere et al. are still high up in the medical hierarchy at the IDSA, tho, and orthodoxy rules.
I understand the need for specialists to be the authorities that others rely on, but in the case of Lyme, it's been overdone. Given that you are now on the patient side of Lyme, I'd encourage you to put on a big ole 'skeptical' hat and walk on the wild side to increase the breadth of data you are gathering. Your well-being is at stake, and a little private heresy is in order as a result. IMO.
I think Ricobord reversed (elsewhere on this site) the statement you mention above -- it was stated the opposite of what it should have been.
Re spinal tap ... read up on it, because it's my understanding that it is NOT particularly diagnostic of Lyme because the Bb don't tend to frolic in spinal fluid. Blood tests through IGeneX or other specialty labs plus a SPECT scan are, to my reading, state of the art for diagnosis.
And IIRC, Stonybrook is no longer top choice for Lyme work.
Also you should be checked for suspected coinfections, and if your doc isn't taking that into account, that's a tad disturbing.
Hey, I kept the dog tick that gave me Ehrlichiosis. It and I both tested positive. All the infectious disease doc would say was "It DOES look rather buggy, doesn't it." Full stop, refused to treat, despite tick, bite, widespread petechial hemorrhaging, etc. These guys are so far into orthodoxy that they can't think straight. I know it's hard for a fellow scientist to think these guys are willfully ignorant, but it happens. You have to look out for yourself in all this, so: do it. Better than being chronically ill. Yes, your symptoms may be in abeyance currently, but they'll be back, when you least expect it. Don't fool around with Lyme. It's not kidding.
About suing a doc who fails to diagnose and treat, it's a nonstarter. They will just hold up the current [IDSA] standard of care as their shield, and you'd lose. Focus on diagnosis and treatment, and in spreading the truth. Given your scientific background, you are perfectly positioned to do so.
Let us know how it goes. J.
Very nice answer to all jackie. No I'M not the vet. I merely brought the tick to my vet to confirm my own ID. I have a BA and MA in biological sciences. The coursework was mostly organismal science, ecology, animal behavior and evolution. I took things like genetics, cell bio, some organic chem, parasitology, invertebrate zoology, molecular evolution, developmental bio, mycology and more.
I currently work for the USDA Asian Longhorned Beetle Program. I send our safety crew ILADS updates frequently. Lyme as a threat is not unfamiliar to our staff, as we have to watch out for it in our line of work.
We work in rural areas, in brush and on trees.
Does the IDSA standard include failure to tell someone that they have been reactive on ANY Ig test?
I currently work for the USDA Asian Longhorned Beetle Program. I send our safety crew ILADS updates frequently. Lyme as a threat is not unfamiliar to our staff, as we have to watch out for it in our line of work.
We work in rural areas, in brush and on trees.
Does the IDSA standard include failure to tell someone that they have been reactive on ANY Ig test?
What does a SPECT scan involve? Gee, if what you say about the spinal tap is true then I'm actually thankful. That seems like an extreme measure of a test. No one wants chronic lyme but a tap is no fun either.
I hope you are doing much better today. It sounds like you are which is very encouraging!
Sorry about missing a word. (I think I need a proofreader!). I meant that a Western Blot rarely shows a FALSE positive, according to LLMDs. And thanks...I am better in some symptoms today, but not others.
Let's see if I'm more clear today in my typing! ;)
The screening test is the first step in the CDC recommended "two tier testing" process. First, they run a screening blood test, either an ELISA or an IFA. Only if that test is positive do they run the Western Blot.
The problem is that with the screening tests, LLMDs say that only about 50-60% of Lyme patients correctly show a positive. ILADS docs believe that immune responses and genetic variations of the bacteria lead to more false negatives than were originally believed.
This happened to me. I was negative on my CSF test (only about 10% of Lyme patients are + on this test) and on the screening test. I didn't get a Western Blot until I asked my sympathetic GP to authorize tests at IGeneX. IGeneX uses a more liberal interpretation of the results and said my IgM WB was positive, even though the CDC criteria said I was negative. It's highly unlikely an Infec. Dis. doc would ever agree that I have Lyme. My immune system didn't get the memo on how it was supposed to perform.
And on the issue of which ticks carry it...this has also been controversial. In the south, they have the Lone Star tick and even though people have gotten Lyme from these ticks, the IDSA still insists that only Ixodes ticks carry it. Jackie's comment about Erlichiosis made me wonder if HME or HGA or even Babesiosis or Mycoplasma could be possibilities for you. They're called co-infections as they often go along with Lyme. But you can also get them without having Lyme. (I have Bartonella as a coinfection.) I think they can all cause the headaches, fatigue, and dizzyness. I don't know if dog ticks carry these, but I wouldn't say never.
And who knows, maybe your immune system has been holding off a case of Lyme for a while and it is "old.". Doesn't mean it's gone, though.
A spect scan shows blood circulation in the brain. Most symptomatic Lyme patients will show reduced flow in certain areas. I already had an MRI that showed about 20 small lesions in my white matter. I didn't need the Spect to convince my LLMD I had Lyme.
Few LLMDs do LPs anymore as they're invasive and rarely helpful.
A floater is a speck in your vision that persists for a period of time and seems to float just out of reach. Mine were light colored and not in my direct vision. They would hover and "float" like a gnat for several seconds or even a minute or two. I only had 1 or 2 before diagnosis. I had far more after I started Abx. I even developed two new variations... One I called "a fountain of sparkles" right after a big coughing fit. The other was a dark, fast moving speck in my peripheral vision, like a bug zipping by and then disappearing. I had the dark "bug" a number of times for a week or two. I haven't had any floaters in at least a month, so I think they're gone.
Let me know if anything I typed doesn't sound right. ;)
Let's see if I'm more clear today in my typing! ;)
The screening test is the first step in the CDC recommended "two tier testing" process. First, they run a screening blood test, either an ELISA or an IFA. Only if that test is positive do they run the Western Blot.
The problem is that with the screening tests, LLMDs say that only about 50-60% of Lyme patients correctly show a positive. ILADS docs believe that immune responses and genetic variations of the bacteria lead to more false negatives than were originally believed.
This happened to me. I was negative on my CSF test (only about 10% of Lyme patients are + on this test) and on the screening test. I didn't get a Western Blot until I asked my sympathetic GP to authorize tests at IGeneX. IGeneX uses a more liberal interpretation of the results and said my IgM WB was positive, even though the CDC criteria said I was negative. It's highly unlikely an Infec. Dis. doc would ever agree that I have Lyme. My immune system didn't get the memo on how it was supposed to perform.
And on the issue of which ticks carry it...this has also been controversial. In the south, they have the Lone Star tick and even though people have gotten Lyme from these ticks, the IDSA still insists that only Ixodes ticks carry it. Jackie's comment about Erlichiosis made me wonder if HME or HGA or even Babesiosis or Mycoplasma could be possibilities for you. They're called co-infections as they often go along with Lyme. But you can also get them without having Lyme. (I have Bartonella as a coinfection.) I think they can all cause the headaches, fatigue, and dizzyness. I don't know if dog ticks carry these, but I wouldn't say never.
And who knows, maybe your immune system has been holding off a case of Lyme for a while and it is "old.". Doesn't mean it's gone, though.
A spect scan shows blood circulation in the brain. Most symptomatic Lyme patients will show reduced flow in certain areas. I already had an MRI that showed about 20 small lesions in my white matter. I didn't need the Spect to convince my LLMD I had Lyme.
Few LLMDs do LPs anymore as they're invasive and rarely helpful.
A floater is a speck in your vision that persists for a period of time and seems to float just out of reach. Mine were light colored and not in my direct vision. They would hover and "float" like a gnat for several seconds or even a minute or two. I only had 1 or 2 before diagnosis. I had far more after I started Abx. I even developed two new variations... One I called "a fountain of sparkles" right after a big coughing fit. The other was a dark, fast moving speck in my peripheral vision, like a bug zipping by and then disappearing. I had the dark "bug" a number of times for a week or two. I haven't had any floaters in at least a month, so I think they're gone.
Let me know if anything I typed doesn't sound right. ;)
I had blaring symptoms of Lyme and took a western blot which the doctor said I am in remission. I have lesions on my brain per brain MRI and my memory is really bad plus I was in Texas, over medicated, so I went on my Texas Lyme support group and this Doctor from another TX town who has the same neuro Lyme symptoms as I have, called me so worried and told me you are not in remission with all those active symptoms, get the heck out of here (TX) and find an LLMD. So the Western Blot can give false negatives. I am now in FL and seeing an LLMD.
Good luck and hope you find an LLMD who can lead you in the right direction because it is a very difficult disease to treat and one must be patient, especially for people like myself and others I know. One had no positive tests for 12 years. Others took 2 years,so pursue on. Feel Better.
Good luck and hope you find an LLMD who can lead you in the right direction because it is a very difficult disease to treat and one must be patient, especially for people like myself and others I know. One had no positive tests for 12 years. Others took 2 years,so pursue on. Feel Better.
Dunno. The tests are so squirrely and so different from different labs and so different in the same person from test to test that it's all a big mess. I haven't looked closely at the IDSA standards for a while, but they have a website, I think. Not sure anymore.
Sorry, that last response from me was in answer to your question:
"Does the IDSA standard include failure to tell someone that they have been reactive on ANY Ig test?"
"Does the IDSA standard include failure to tell someone that they have been reactive on ANY Ig test?"
A SPECT scan experience is much like an MRI procedure. Shows areas of low blood flow in the brain (hypoperfusion) due to swelling, which Lyme can cause.
A floater in the visual field is any bit of trash floating in the vitreous humor (the gooey stuff inside the eyeball). It occurs with age from the collapse of the protein matrix inside the eye, or with hemorrhages, or other ailments. Sometimes they go away, sometimes the brain just learns to ignore them.
Oops, I see Rico answered a lot of your questions already.
In response to the comment: "And who knows, maybe your immune system has been holding off a case of Lyme for a while and it is 'old.'. Doesn't mean it's gone, though." -- I would say that a reinfection can happen (that is, through another bite), and the immune system that was handling keeping the first infection down suddenly can't cope with a new bunch of invaders. I think this is what happened to me.
In response to the comment: "And who knows, maybe your immune system has been holding off a case of Lyme for a while and it is 'old.'. Doesn't mean it's gone, though." -- I would say that a reinfection can happen (that is, through another bite), and the immune system that was handling keeping the first infection down suddenly can't cope with a new bunch of invaders. I think this is what happened to me.
Do you think that your doctor or PA would authorize a Western Blot for you? IGeneX is great at finding cases other labs miss, but they don't take insurance. I gave my credit card # on the order, and then submitted it for reimbursement. I think I got more than half the cost back. (Best money I've ever spent.)
Another possibility is Stonybrook's lab. A family doc who treats Lyme in MD blogs about treating Lyme. He likes IGeneX & Stonybrook as they report more details (bands) than any other lab. But he also blogs that he consistently gets different results from different labs, further showing that the results are not absolute.
This might help you make a decision on whether to go to an out of pocket Lyme doc or not.
Another possibility is Stonybrook's lab. A family doc who treats Lyme in MD blogs about treating Lyme. He likes IGeneX & Stonybrook as they report more details (bands) than any other lab. But he also blogs that he consistently gets different results from different labs, further showing that the results are not absolute.
This might help you make a decision on whether to go to an out of pocket Lyme doc or not.
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