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The latest in my Lyme Diagnosis - Strange request from my Dr?
I have my MRI scheduled on a 3 Tesla machine for next Tuesday to look for more lesions ( I have one that's been there for 6yrs I think). I talked to my doc today and he wants me to come in with my friend who has Lyme? He wants this b/c he knows she has a vast amt. of knowledge about Lyme. It seems strange, but at the same time, it makes sense. Who better to ask questions than someone who has experienced it first hand? He said he wants to be careful in my treatment, which, I don't blame him one bit. I'm not sure when he will test me for coinfections, but I definitely want to be tested. He also said something about re-testing me? I'm not sure I understood him correctly. I don't want to shell out another $475 for Igenex labs! I think my friend will help me in telling him what to do. I hope he keeps his courage! I can tell he is getting nervous about it...
Hi Hope. How are you coping my friend? Hang in there; there are good days. Love to you, Amy
I am literally bombarded by information right now about Lyme and this forum is my life line right now. Before Lyme, I was on the MS limbo list. I've read all these posts and I don't see any ill will on anyone's part. I am particularly sick today and all this week, for that matter, and I think when we are reading and we are fatigued, hurting, etc...our perceptions of others' veiwpoints may be slightly skewed and we miss the fact that most here have a common goal.
1) Everyone here is trying to get better.
2) Everyone in this discussion are passionate about helping others...I've seen it first hand. This, in spite of illness, is a noble act.
3) Although it's great to apologize if you feel it necessary, I think we have to realize that it is only our debates that help us to understand. Let's keep doing it and don't feel the need to be apologetic as quickly! If we took everyone's advice as the gospel, we'd probably be less diagnosed and/treated than we are now.
4) In sum, the people that are on this forum and post to other's questions in spite of their own illness are shining stars. Others may suffer and ask questions, all the while not reaching out to give that "cyber hug" to other sick posters. That is what makes posters like wonko, JackieCalifornia and Quix shine.
So, thanks guys, for your support AND your lively debates. It's healthy debate!:) We will not increase awareness or clarity without it.
1) Everyone here is trying to get better.
2) Everyone in this discussion are passionate about helping others...I've seen it first hand. This, in spite of illness, is a noble act.
3) Although it's great to apologize if you feel it necessary, I think we have to realize that it is only our debates that help us to understand. Let's keep doing it and don't feel the need to be apologetic as quickly! If we took everyone's advice as the gospel, we'd probably be less diagnosed and/treated than we are now.
4) In sum, the people that are on this forum and post to other's questions in spite of their own illness are shining stars. Others may suffer and ask questions, all the while not reaching out to give that "cyber hug" to other sick posters. That is what makes posters like wonko, JackieCalifornia and Quix shine.
So, thanks guys, for your support AND your lively debates. It's healthy debate!:) We will not increase awareness or clarity without it.
I just want to apologize to JackieCalifornia and anyone else who may not have liked my post. I value everyone's input on this forum and didn't mean to let my own raw emotions and out of context interpretations cause any strife.
The context of my comment was about Lyme in comparison to MS and what seems odd to me about trying to nail down whether someone has something as elusive as MS while ignoring whether one might have Lyme, which compared to MS is more on the diagnosable and curable end of the curve.
I've had my own trials with Lyme for years, and it has virtually destroyed what I used to call 'my life' -- so I'm hardly one to denigrate the problems and perils of the disease, but if you take it that way, well, so be it.
I also know many doctors who work very hard and do a very good job -- and who on a few occasions have literally saved my life -- but I've also run into a few who are either too arrogant or too burned out to be let loose on the public, yet practice away they do, with terrible and sometimes fatal consequences.
Good luck to everyone --
I've had my own trials with Lyme for years, and it has virtually destroyed what I used to call 'my life' -- so I'm hardly one to denigrate the problems and perils of the disease, but if you take it that way, well, so be it.
I also know many doctors who work very hard and do a very good job -- and who on a few occasions have literally saved my life -- but I've also run into a few who are either too arrogant or too burned out to be let loose on the public, yet practice away they do, with terrible and sometimes fatal consequences.
Good luck to everyone --
I don't think Jackie meant to imply that the Lyme diagnosis is an easy one.
I see the "detectable and curable" phrase as having an implied "potentially" in front of it. It sometimes is detectable and curable, thus every possible effort must be made to look, see and even consider an empiric trial of antibiotics. Just as MS is sometimes so classic and clear that it's diagnosis is simple, arriving at a Lyme diagnosis can also sometimes be done with some certainty.
Wonko, you are as scarred as anyone who has lost function and the spark of what makes a person special and able. All of us who have flailed at an unknown destroyer and been ignored, mocked, dismissed, or rejected by our doctors were scarred. Certainly I was, and it shows in my quick condemnation of doctors who are stupid, bigotted, lazy or uneducated. On top of that, you are not seeing that you, indeed, are on a certain path out of your own h ell.
You are also right that it is "a landmine for quick emotions." These are the same emotions, I think, that have caused me to wonder why I seem to be in a feud with others. Part of it is that I insist that people make rational arguments to convince me. The other part is that we are all in pain over what did happen and continues to happen to us.
Quix
I see the "detectable and curable" phrase as having an implied "potentially" in front of it. It sometimes is detectable and curable, thus every possible effort must be made to look, see and even consider an empiric trial of antibiotics. Just as MS is sometimes so classic and clear that it's diagnosis is simple, arriving at a Lyme diagnosis can also sometimes be done with some certainty.
Wonko, you are as scarred as anyone who has lost function and the spark of what makes a person special and able. All of us who have flailed at an unknown destroyer and been ignored, mocked, dismissed, or rejected by our doctors were scarred. Certainly I was, and it shows in my quick condemnation of doctors who are stupid, bigotted, lazy or uneducated. On top of that, you are not seeing that you, indeed, are on a certain path out of your own h ell.
You are also right that it is "a landmine for quick emotions." These are the same emotions, I think, that have caused me to wonder why I seem to be in a feud with others. Part of it is that I insist that people make rational arguments to convince me. The other part is that we are all in pain over what did happen and continues to happen to us.
Quix
You write: "...Lyme is both detectable by test and curable by treatment..."
In my personal experience the testing for Lyme failed. I presented with neurological symptoms in a relapsing-remitting pattern, and fit the age/gender demographic for the onset of RRMS. It was after a negative ELISA (and no bull's eye rash, and no tick bite) that I got MRI's and a lumbar puncture. I truly wish I could have avoided the ordeal of an MS work up, but I don't see how?
In theory Lyme should be reliably detected by tests, but I don't think we're there. With Lyme mimicking nasty diseases that can strike otherwise healthy people in their prime, I don't see an easy short cut to rule out other conditions.
What I see as concerning and in need of retuning along the lines of diagnosis is when a thorough differential diagnosis (by a neuro, rhuemy, or other doctor(s)) fails to return any definitive results, and the patient is then simply left in limbo. I feel in those cases, re-examining the possibility of Lyme, including a possible trial of antibiotics, makes sense. Yet as Quix notes, some medical professionals take that darn negative ELISA as the bottom line. (That was unfortunately my PCP's interpretation...)
The last advice I had from a (leading East coast university) neurologist was that I should repeat my MRI every six months and "hope for the best." I have not taken that advice, but I have not forgotten it, either. At this time, my disease has not indicated any advancing neurological involvement. If that status changes, I will edit my choice to follow up on my abnormal MRI. This is not my advice to others, it's just my own reaction to the current lack of understanding regarding Lyme and brain lesions.
In the end, I went against the grain of 4 neuros, a rheumy, and my PCP to seek treatment for my Lyme disease, which was by and large diagnosed clinically. Otherwise healthy before this illness, and five months into treatment, I am still struggling.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
To summarize my wayward ramblings, my reaction to the statement that "Lyme is both detectable by test and curable by treatment" is that it seems to diminish the entire experience I had to get a dx and continue to endure to get tx. (I'm 100% positive that's not what JackieCalifornia intended, that's just my emotional reaction.)
I think many of us here have been through long and difficult paths to diagnosis, and still deal with doubts, questions, and concerns of other illness. I don't think there are easy answers to this. Since the experience can have such a huge impact on one's life, it's certainly a rich topic for discussion and landmine for strong emotions.
In my personal experience the testing for Lyme failed. I presented with neurological symptoms in a relapsing-remitting pattern, and fit the age/gender demographic for the onset of RRMS. It was after a negative ELISA (and no bull's eye rash, and no tick bite) that I got MRI's and a lumbar puncture. I truly wish I could have avoided the ordeal of an MS work up, but I don't see how?
In theory Lyme should be reliably detected by tests, but I don't think we're there. With Lyme mimicking nasty diseases that can strike otherwise healthy people in their prime, I don't see an easy short cut to rule out other conditions.
What I see as concerning and in need of retuning along the lines of diagnosis is when a thorough differential diagnosis (by a neuro, rhuemy, or other doctor(s)) fails to return any definitive results, and the patient is then simply left in limbo. I feel in those cases, re-examining the possibility of Lyme, including a possible trial of antibiotics, makes sense. Yet as Quix notes, some medical professionals take that darn negative ELISA as the bottom line. (That was unfortunately my PCP's interpretation...)
The last advice I had from a (leading East coast university) neurologist was that I should repeat my MRI every six months and "hope for the best." I have not taken that advice, but I have not forgotten it, either. At this time, my disease has not indicated any advancing neurological involvement. If that status changes, I will edit my choice to follow up on my abnormal MRI. This is not my advice to others, it's just my own reaction to the current lack of understanding regarding Lyme and brain lesions.
In the end, I went against the grain of 4 neuros, a rheumy, and my PCP to seek treatment for my Lyme disease, which was by and large diagnosed clinically. Otherwise healthy before this illness, and five months into treatment, I am still struggling.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
To summarize my wayward ramblings, my reaction to the statement that "Lyme is both detectable by test and curable by treatment" is that it seems to diminish the entire experience I had to get a dx and continue to endure to get tx. (I'm 100% positive that's not what JackieCalifornia intended, that's just my emotional reaction.)
I think many of us here have been through long and difficult paths to diagnosis, and still deal with doubts, questions, and concerns of other illness. I don't think there are easy answers to this. Since the experience can have such a huge impact on one's life, it's certainly a rich topic for discussion and landmine for strong emotions.
Jackie - Your points are well-taken. Yes, why not look and think especially hard about a treatable and curable infection while examining for MS? If there is doubt why not treat for both? We have had those members also.
As a physician who practiced in the far Western States, may I say that it is not always willful blindness that leads primary care doctors to reject Lyme as a potential diagnosis. For many years and for many doctors, finding or hearing of a case of Lyme was a true rarity. It was a Zebra in a corral full of horses. In the current clime, these doctors don't think about Lyme because of the politics that keep Lyme marginalized and in the realm of doubtful reality and OUT OF the medical journals. It really is not the fault of the practicing doctors. The life of a doctor is more than packed with information that they barely have time to skim, much less go after all the stuff that is not appearing in the journals they trust.
Yes, I am being a little defensive of the guys "on the line." My days were 12 and 14 hours long with eating done over charts and running down hospital corridors. Now, granted I was I pediatrician. I only saw one case of Lyme in my career that I recognized and that one rose up and slapped me in the face. 1999 and a Bullseye rash came in. I researched and found that there had been ZERO reported cases of Lyme in Nevada. Nonetheless, her ELISA was positive and I treated and reported. But that only explains the PCPs. The neurologists and the ID specialists are the ones you are really mad at, I guess.
I am not trying to add controversy but, the Lyme vs MS problem also works the other way. In the last year I have met a good half dozen people that were treated for Lyme for periods up to a couple years, often with just the improvement that one would expect from Relapsing Remitting MS only for it to become clear (as it can be) that they had MS instead. MS is ALSO a disease for which early treatment is the best insurance against later disability. A year lost to nontreatment in MS is truly a tragedy.
So we share some real concerns. Despite the animosity that some have had toward me and my "approach" to the MS - Lyme problem, I really think we have a lot in common.
Quix
As a physician who practiced in the far Western States, may I say that it is not always willful blindness that leads primary care doctors to reject Lyme as a potential diagnosis. For many years and for many doctors, finding or hearing of a case of Lyme was a true rarity. It was a Zebra in a corral full of horses. In the current clime, these doctors don't think about Lyme because of the politics that keep Lyme marginalized and in the realm of doubtful reality and OUT OF the medical journals. It really is not the fault of the practicing doctors. The life of a doctor is more than packed with information that they barely have time to skim, much less go after all the stuff that is not appearing in the journals they trust.
Yes, I am being a little defensive of the guys "on the line." My days were 12 and 14 hours long with eating done over charts and running down hospital corridors. Now, granted I was I pediatrician. I only saw one case of Lyme in my career that I recognized and that one rose up and slapped me in the face. 1999 and a Bullseye rash came in. I researched and found that there had been ZERO reported cases of Lyme in Nevada. Nonetheless, her ELISA was positive and I treated and reported. But that only explains the PCPs. The neurologists and the ID specialists are the ones you are really mad at, I guess.
I am not trying to add controversy but, the Lyme vs MS problem also works the other way. In the last year I have met a good half dozen people that were treated for Lyme for periods up to a couple years, often with just the improvement that one would expect from Relapsing Remitting MS only for it to become clear (as it can be) that they had MS instead. MS is ALSO a disease for which early treatment is the best insurance against later disability. A year lost to nontreatment in MS is truly a tragedy.
So we share some real concerns. Despite the animosity that some have had toward me and my "approach" to the MS - Lyme problem, I really think we have a lot in common.
Quix
Thanks for posting that great information. There have been some questions on MS recently so your post should shed some light.
I am suspecting that drs default to diagnosis of MS rather than pursue Lyme because of the politics surrounding Lyme.
Given that Lyme is both detectable by test and curable by treatment, while MS is a diagnosis by exclusion and not yet curable, the only thing that would seem to explain the current approach by the medical profession is its willful blindness and obstinate refusal to see Lyme other than through the CDC's tiny little window.
Why not start with Lyme diagnosis to rule it out before proceeding to nasty business like spinal taps and MRIs, neither of which is particularly diagnostic of Lyme? Brain lesions are evidence of ... something, but a SPECT scan can tell more about brain perfusion and thus the severity of neuroborreliosis, although how that affects the course of treatment I do not know.
It seems a number of people here have gone through the keyhole of MS testing and presumed diagnosis before arriving at Lyme as definitive, likely or possible -- but that doesn't mean it's the best way to approach diagnosis, yet medicine persists to use that approach. Time is important in treating Lyme, both for its impact on daily life and the detriment to treatability the longer treatment is delayed. I guess I just don't get it!
Given that Lyme is both detectable by test and curable by treatment, while MS is a diagnosis by exclusion and not yet curable, the only thing that would seem to explain the current approach by the medical profession is its willful blindness and obstinate refusal to see Lyme other than through the CDC's tiny little window.
Why not start with Lyme diagnosis to rule it out before proceeding to nasty business like spinal taps and MRIs, neither of which is particularly diagnostic of Lyme? Brain lesions are evidence of ... something, but a SPECT scan can tell more about brain perfusion and thus the severity of neuroborreliosis, although how that affects the course of treatment I do not know.
It seems a number of people here have gone through the keyhole of MS testing and presumed diagnosis before arriving at Lyme as definitive, likely or possible -- but that doesn't mean it's the best way to approach diagnosis, yet medicine persists to use that approach. Time is important in treating Lyme, both for its impact on daily life and the detriment to treatability the longer treatment is delayed. I guess I just don't get it!
Hi there! I'm delighted to see you over here:) This is a good discussion and I'm glad to have you chime in. I want to see studies too! The more I can get my hands on, the better. As promised, I will update on the MS forum after my MRI next Tuesday and the following neuro appt. Friday. It should be interesting...
I also think that it is certainly possible for a person with MS to become infected with Lyme and vice versa. Having one does not confer an immunity to the other. I suspect Hope's Neuro is keeping his mind open. Having both would be a neurologic nightmare - as if having either is not already.
MS is a diagnosis of exclusion as Wonko says. Part of the work up is testing for Lyme, but that process is almost always flawed as a negative ELISA is accepted by most as proof-positive (though not on our forum).
As for the cause(s) of MS, Jackie is completely correct. There is strong evidence that a combination of factors is at work in MS: The first is a genetic predisposition wherein many dozens of genes can combine to make one more susceptible. The disease occasionally clusters within families - even when the family members are not in close proximity. To date there are no genes discovered that accurately predict MS. Some genes may be protective also. MS is unheard of in Hungarian Gypsies. There are some tissue types that are more common in MS of some ethnicities and other types seen in others. But, these are not specific either.
There is strong and growing evidence that Vit D levels in childhood and even in the mother during gestation play a role. This is likely the role that latitude plays as MS becomes less common the closer to the equator you are in both the northern and southern hemispheres. It is probably also the answer to why there are more spring births of MSers (in the northern hemisphere) than fall births. Less UV exposure of the mother in the last months before delivery.
The third strong factor appears to be a prior infectious trigger. The strongest evidence is for EBV as those people who 1) have had Infectious Mono (as opposed to an asymptomatic infection like most people have) as a result of their EBV infection are far more likely to develop MS and 2) those whose immune systems respond differently to the EB virus and who maintain higher EBV titers through life are more likely to develop MS. Other big contenders, but with less strong evidence are Chlamydia p. and HHV-6. Lyme was once thought to be a possible cause when Lyme cysts were reported to be found in the autopsied brains of seven people. However, no one else (in several different studies) has ever been able to replicate this finding (by findings cysts) and it is no longer considered likely.
Not to detract from Hope's post, but I have always hoped that a thorough search for clues in a possible MS patient for any of those "systemic and inflammatory" symptoms that Wonko talked about, that are more common in Lyme (and never a part of MS) can be helpful in homing in on at least some of the Lyme sufferers. I have always wanted to ask about that here, and this is not a bad place, given we are suggesting that Hope's Neuro is keeping his mind open about all that may be happening to her.
When we hear that a person has problems with joint pain and stiffness, fevers, cough, rashes, sweats, cardiac problems, interstitial cytitis, it is a strong sign that MS is not at the root of their problems. Also those that have symptoms that dance around constantly, here and there in the same day. And those that have global fasciculations (since these are more of a peripheral nervous system product). These are all signs of a system inflammation and not one limited to the CNS like MS. When we see things like this we send people over here.
You all bring up a topic that I am interested in and that is whether some differences between the CNS lesions of Lyme and MS can be found. If any of you find good studies on this would you give me a head's up?
Hi, Hope. Sorry to barge in, but also wanted to say I am glad your doc is thinking hard about you. Hi, Wonko and Patsy.
Quix
MS is a diagnosis of exclusion as Wonko says. Part of the work up is testing for Lyme, but that process is almost always flawed as a negative ELISA is accepted by most as proof-positive (though not on our forum).
As for the cause(s) of MS, Jackie is completely correct. There is strong evidence that a combination of factors is at work in MS: The first is a genetic predisposition wherein many dozens of genes can combine to make one more susceptible. The disease occasionally clusters within families - even when the family members are not in close proximity. To date there are no genes discovered that accurately predict MS. Some genes may be protective also. MS is unheard of in Hungarian Gypsies. There are some tissue types that are more common in MS of some ethnicities and other types seen in others. But, these are not specific either.
There is strong and growing evidence that Vit D levels in childhood and even in the mother during gestation play a role. This is likely the role that latitude plays as MS becomes less common the closer to the equator you are in both the northern and southern hemispheres. It is probably also the answer to why there are more spring births of MSers (in the northern hemisphere) than fall births. Less UV exposure of the mother in the last months before delivery.
The third strong factor appears to be a prior infectious trigger. The strongest evidence is for EBV as those people who 1) have had Infectious Mono (as opposed to an asymptomatic infection like most people have) as a result of their EBV infection are far more likely to develop MS and 2) those whose immune systems respond differently to the EB virus and who maintain higher EBV titers through life are more likely to develop MS. Other big contenders, but with less strong evidence are Chlamydia p. and HHV-6. Lyme was once thought to be a possible cause when Lyme cysts were reported to be found in the autopsied brains of seven people. However, no one else (in several different studies) has ever been able to replicate this finding (by findings cysts) and it is no longer considered likely.
Not to detract from Hope's post, but I have always hoped that a thorough search for clues in a possible MS patient for any of those "systemic and inflammatory" symptoms that Wonko talked about, that are more common in Lyme (and never a part of MS) can be helpful in homing in on at least some of the Lyme sufferers. I have always wanted to ask about that here, and this is not a bad place, given we are suggesting that Hope's Neuro is keeping his mind open about all that may be happening to her.
When we hear that a person has problems with joint pain and stiffness, fevers, cough, rashes, sweats, cardiac problems, interstitial cytitis, it is a strong sign that MS is not at the root of their problems. Also those that have symptoms that dance around constantly, here and there in the same day. And those that have global fasciculations (since these are more of a peripheral nervous system product). These are all signs of a system inflammation and not one limited to the CNS like MS. When we see things like this we send people over here.
You all bring up a topic that I am interested in and that is whether some differences between the CNS lesions of Lyme and MS can be found. If any of you find good studies on this would you give me a head's up?
Hi, Hope. Sorry to barge in, but also wanted to say I am glad your doc is thinking hard about you. Hi, Wonko and Patsy.
Quix
It sounds like your doctor is being cautious and like you said, leaving no stone unturned. He sounds like a good doctor. He seems to really care about you too. It also sounds like he will do whatever it takes to give you the proper treatment you need.
Sounds like your neuro is up to making a Lyme diagnosis. Wow! I'm just glad to hear of it -- a non-LLMD diagnosing and treating Lyme w/o benefit of scientific research is nothing short of brave!
Have read about Dr. J. in NC moving his office to SC due to the mishap with two patients. One to do with ABX the other to do w/ morphine.
People do love this doctor though.
Good luck with the next visit. It is a little odd -- the request...Oh well. We're all learning with this illness.
Have read about Dr. J. in NC moving his office to SC due to the mishap with two patients. One to do with ABX the other to do w/ morphine.
People do love this doctor though.
Good luck with the next visit. It is a little odd -- the request...Oh well. We're all learning with this illness.
Whew, great discussion. I just got back on today. I was very sick and in alot of pain yesterday evening and through this morning. I still feel it, so the verdict is still out (neuropathy and nausea?)
Anyway, yes, I had that one, non-enhancing lesion for years. I will be having a 3 Tesla MRI insted of 1.5 Tesla, however, which is more likely to pick up lesions. So, I agree with him that we should keep an eye on my brain. A friend of mine was diagnosed with MS at an extremely reputable clinic (33 LESIONS) on this person's brain and then when they saw my neuro, they were diagnosed with Lyme. I don't know the details, but I know that our doc has been asked by these two Lyme sufferers (begged probably) to treat them and he relented when he saw that nobody in our area would do the same. He is honoring the Hypocratic Oath, thank God. He does want to be extremely cautious and says he wants to document correctly and leave no stone unturned. I have no complaints with that, that is for sure. Test me, poke me, whatever you gotta do! If it leads to answers, I'm game.
I understand the concern about being a guinea pig, but I think he will be strictly guided by my friend and my friend's LLMD. I did call an LLMD clinic that wants $500 deposit with appts. out to June/July. Yikes. I don't know if I want to forfeit my $500 AND I'm not sure which LLMD would be a good fit for me? If anyone would like to throw out their favorite LLMD in my area in a private message, I would appreciate it! I can go to SC, NC VA, MD, and anywhere in that general vicinity. Does anyone object to the one who lost his license (or got it suspended?) a couple years ago in NC and subsequently moved to SC?
Interesting note....lots of floaters in my vision while I typed this note. Sigh:)
Anyway, yes, I had that one, non-enhancing lesion for years. I will be having a 3 Tesla MRI insted of 1.5 Tesla, however, which is more likely to pick up lesions. So, I agree with him that we should keep an eye on my brain. A friend of mine was diagnosed with MS at an extremely reputable clinic (33 LESIONS) on this person's brain and then when they saw my neuro, they were diagnosed with Lyme. I don't know the details, but I know that our doc has been asked by these two Lyme sufferers (begged probably) to treat them and he relented when he saw that nobody in our area would do the same. He is honoring the Hypocratic Oath, thank God. He does want to be extremely cautious and says he wants to document correctly and leave no stone unturned. I have no complaints with that, that is for sure. Test me, poke me, whatever you gotta do! If it leads to answers, I'm game.
I understand the concern about being a guinea pig, but I think he will be strictly guided by my friend and my friend's LLMD. I did call an LLMD clinic that wants $500 deposit with appts. out to June/July. Yikes. I don't know if I want to forfeit my $500 AND I'm not sure which LLMD would be a good fit for me? If anyone would like to throw out their favorite LLMD in my area in a private message, I would appreciate it! I can go to SC, NC VA, MD, and anywhere in that general vicinity. Does anyone object to the one who lost his license (or got it suspended?) a couple years ago in NC and subsequently moved to SC?
Interesting note....lots of floaters in my vision while I typed this note. Sigh:)
I agree with Wonko's post, in all regards.
And the part about scheduling visits with various doctors, absolutely: I did that, because if you work serially (one after the other, end to end) it could take forever, given the wait times for appointments. Attack on all fronts.
I had plunked down over $300 for an appointment 'reservation' with a rather fringe-y endocrinologist (my 4th, I believe) when still hunting for a diagnosis, and it was going to be about 3 months before he was available. Waiting, waiting....while I was also continuing to research other possible diagnoses and see other doctors. Stroke of luck, the $300 guy cancelled on me, and I got my money back (after many follow up phone calls). It's a jungle out there, so keep after them when you're feeling up to it.
And the part about scheduling visits with various doctors, absolutely: I did that, because if you work serially (one after the other, end to end) it could take forever, given the wait times for appointments. Attack on all fronts.
I had plunked down over $300 for an appointment 'reservation' with a rather fringe-y endocrinologist (my 4th, I believe) when still hunting for a diagnosis, and it was going to be about 3 months before he was available. Waiting, waiting....while I was also continuing to research other possible diagnoses and see other doctors. Stroke of luck, the $300 guy cancelled on me, and I got my money back (after many follow up phone calls). It's a jungle out there, so keep after them when you're feeling up to it.
I spent several months worrying that I had MS, here's the novice understanding that I obtained during that time:
The standard requirements for a MS diagnosis must meet the MacDonald criteria, which you can google or read about on the Health Pages over on the MS forum. The criteria are supposed to establish dissemination in time and space.
It is confusing, because while there are "slam dunk" cases of MS and Lyme, both can also require the doctor to rely on clinical evidence, and both can be a diagnosis of exclusion.
Technically, the MacDonald criteria do allow for a purely clinical diagnosis. However, since modern imaging has come so far, the vast majority of neurologists will not diagnosis MS without MRI evidence.
I think JackieCalifornia is right-the cause of MS is not known, it is defined more in terms of the sort of damage it does.
MS affects the central nervous system, while Lyme is systemic. So while Lyme can cause many symptoms of MS, Lyme can also invade other systems and the joints, and stand apart in that way.
I recall from Hope75's back story that she has a lesion, I think on the brain. Often doctors suggest following up and repeating the MRI periodically to monitor for any changes.
Lyme can show up on MRI and cause lesions that are similar to those associated with MS. I've tried to research this more, as I am in this situation, but very little is known about whether or not the Lyme lesions are the result of demyelination or some other mechanism, whether they can resolve with treatment or are permanent, etc. I have consistently read that brain lesions from Lyme are more common in the UK than in the US, and that a difference brain imaging technique, SPECT, may be more promising for imaging the affects of Lyme on the brain.
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As for Hope75's original post about her doctor's unusual request:
Like JackieCalifornia says, I give the guy kudos, but also feel wary that he doesn't necessarily have the experience to treat you. Is your friend that he wants to meet an MD or other medical professional? That would still worry me, but perhaps a shade less.
For me, part of the reason I sought out an LLMD was because my regular doc wouldn't budge: No Western blot, no trial of antibiotics, no more discussion of Lyme, period. (Deny much?) But as I learned more about Lyme, I identified a second reason: My LLMD has had success with treating many people in situations very similar to mine. The track record meant a lot to me. Through other sites and local means, I did network with several patients of the practice I go to and got "reviews."
But, working through an eager, insured doctor, especially since you are keeping yourself informed, may be a good fit for you. It's obviously your choice, so I'd say just keep all of your options in mind as you move ahead.
I forget if you've already done so, but perhaps research some LLMD's in your area in tandem with working with your current doc. Many have wait lists, you could even make an appt. for a few months out "just in case," and cancel as necessary. Just make sure you know their cancellation policy, hehe. That way, you'll have a head start if you do feel you need a change. Work in parallel, not serial.
The standard requirements for a MS diagnosis must meet the MacDonald criteria, which you can google or read about on the Health Pages over on the MS forum. The criteria are supposed to establish dissemination in time and space.
It is confusing, because while there are "slam dunk" cases of MS and Lyme, both can also require the doctor to rely on clinical evidence, and both can be a diagnosis of exclusion.
Technically, the MacDonald criteria do allow for a purely clinical diagnosis. However, since modern imaging has come so far, the vast majority of neurologists will not diagnosis MS without MRI evidence.
I think JackieCalifornia is right-the cause of MS is not known, it is defined more in terms of the sort of damage it does.
MS affects the central nervous system, while Lyme is systemic. So while Lyme can cause many symptoms of MS, Lyme can also invade other systems and the joints, and stand apart in that way.
I recall from Hope75's back story that she has a lesion, I think on the brain. Often doctors suggest following up and repeating the MRI periodically to monitor for any changes.
Lyme can show up on MRI and cause lesions that are similar to those associated with MS. I've tried to research this more, as I am in this situation, but very little is known about whether or not the Lyme lesions are the result of demyelination or some other mechanism, whether they can resolve with treatment or are permanent, etc. I have consistently read that brain lesions from Lyme are more common in the UK than in the US, and that a difference brain imaging technique, SPECT, may be more promising for imaging the affects of Lyme on the brain.
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As for Hope75's original post about her doctor's unusual request:
Like JackieCalifornia says, I give the guy kudos, but also feel wary that he doesn't necessarily have the experience to treat you. Is your friend that he wants to meet an MD or other medical professional? That would still worry me, but perhaps a shade less.
For me, part of the reason I sought out an LLMD was because my regular doc wouldn't budge: No Western blot, no trial of antibiotics, no more discussion of Lyme, period. (Deny much?) But as I learned more about Lyme, I identified a second reason: My LLMD has had success with treating many people in situations very similar to mine. The track record meant a lot to me. Through other sites and local means, I did network with several patients of the practice I go to and got "reviews."
But, working through an eager, insured doctor, especially since you are keeping yourself informed, may be a good fit for you. It's obviously your choice, so I'd say just keep all of your options in mind as you move ahead.
I forget if you've already done so, but perhaps research some LLMD's in your area in tandem with working with your current doc. Many have wait lists, you could even make an appt. for a few months out "just in case," and cancel as necessary. Just make sure you know their cancellation policy, hehe. That way, you'll have a head start if you do feel you need a change. Work in parallel, not serial.
It's known what bacterium causes Lyme, but to my knowledge there is no identified causative agent for MS. The blood tests for Lyme look for the tracks of the bacteria; but tests for MS have nothing to look for.
That would to my understanding make MS, not Lyme, a diagnosis of exclusion. No?
That would to my understanding make MS, not Lyme, a diagnosis of exclusion. No?
My understanding from my neuro is that for the most part it is what you said, but of course they run other tests to help guide their analysis (e.g., spinal tap, nerve tests, albeit much less definitive than MRI). My feeling is that Lyme tends to be more of a process of exclusion than MS, even though MS maybe termed that -- but that both should be tested in parallel since since the symptoms overlap a lot.
The key advantage of MS is that there aren't too diametrically opposed camps with opposite dx.
The key advantage of MS is that there aren't too diametrically opposed camps with opposite dx.
I know this isn't about MS vs Lyme, but it's a place to start.....
I just did a little quick reading on MS, and a couple of seemingly reliable sources say it's diagnosed by neurological symptoms and an MRI. No other tests.
Lyme is diagnosed by symptoms and blood tests.
So why not start with Lyme blood tests and a physical exam to rule out Lyme, since MS seems to be a diagnosis by exclusion more than Lyme is? Just wondering -- I don't know the answer.
I just did a little quick reading on MS, and a couple of seemingly reliable sources say it's diagnosed by neurological symptoms and an MRI. No other tests.
Lyme is diagnosed by symptoms and blood tests.
So why not start with Lyme blood tests and a physical exam to rule out Lyme, since MS seems to be a diagnosis by exclusion more than Lyme is? Just wondering -- I don't know the answer.
Fair question -- I don't know the answer.
The first thing that comes to mind as a possible other diagnosis is MS -- is MS harder to diagnose than Lyme because of lack of effective blood tests for MS? As poor as the Lyme blood tests are, it's my hazy impression that combined with clinical symptoms, Lyme is a more direct diagnosis than MS -- or am I totally wrong, which I may well be. I was never told I needed to rule out MS etc., because the neurologist I saw just thought I was a faker and ran some tests but refused to see me to discuss them.
Besides fibromyalgia and chronic fatigue and hormone deficiencies, no one ever came up with a tentative diagnosis before I found my way to an LLMD, so perhaps there was a whole voyage through other possible diagnoses that I missed.
The first thing that comes to mind as a possible other diagnosis is MS -- is MS harder to diagnose than Lyme because of lack of effective blood tests for MS? As poor as the Lyme blood tests are, it's my hazy impression that combined with clinical symptoms, Lyme is a more direct diagnosis than MS -- or am I totally wrong, which I may well be. I was never told I needed to rule out MS etc., because the neurologist I saw just thought I was a faker and ran some tests but refused to see me to discuss them.
Besides fibromyalgia and chronic fatigue and hormone deficiencies, no one ever came up with a tentative diagnosis before I found my way to an LLMD, so perhaps there was a whole voyage through other possible diagnoses that I missed.
Maybe I'm not following the thread, but I figured since there is always uncertainty with Lyme dx, MRIs main function maybe to rule out other dx.
Can I ask a really blunt question? Is this dr an LLMD, or is he learning on your case? Points to him for wanting to learn, if so, but rather than talk to your friend, why doesn't he crank up the ole computer and read the ILADS website treatment guidelines by Burrascano and others?
Would someone educate me on what diagnostic function an MRI provide with regard to Lyme? Will demyelination detected on an MRI change the way in which Lyme is treated?
The coinfections can be nasty in altogether different ways, and my LLMD treated my babesia first -- it was definitely a lot worse than the remaining Lyme that I am now trying to kill. I'm also a bit puzzled why drs go after Lyme first and wait to diagnose/treat coinfections, esp since Lyme can be longer and harder to eradicate, thus delaying treatment for the coinfections, unless again I am missing something.
Somebody quick educate me!
Would someone educate me on what diagnostic function an MRI provide with regard to Lyme? Will demyelination detected on an MRI change the way in which Lyme is treated?
The coinfections can be nasty in altogether different ways, and my LLMD treated my babesia first -- it was definitely a lot worse than the remaining Lyme that I am now trying to kill. I'm also a bit puzzled why drs go after Lyme first and wait to diagnose/treat coinfections, esp since Lyme can be longer and harder to eradicate, thus delaying treatment for the coinfections, unless again I am missing something.
Somebody quick educate me!
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