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Could it be Lyme?
Over the years I have had positive Lyme screen tests (B. burgdorferi Ab, IgG, IgM) but then the ensuing Western Blot tests to back it up were both negative. The lab indicated that this could mean I have autoimmune disease causing a false-positive Lyme, but my CRP and sed rates are always normal so I was told I could not have autoimmune disease. After quite a while I was referred to an "infectious disease specialist" and that @$#% just sat on his keister and told me (without examining me or doing any tests) that I could not have Lyme disease because it is "not a chronic disease." Meanwhile, I am deteriorating with neurologic symptoms that are like a textbook case of ALS - but the doctors just blow me off. I have muscle wasting, but no joint paint. No pain at all except when my neck muscles get so tired of holding my head up. When I use a neck brace, the pain goes away. I have extreme weakness, fatigue, muscle cramping, weakness in cheeks, mouth, arms, legs, neck. Walk with cane. Falling. Nighttime breathing issues. Choking on saliva sometimes. Etc.
Do you think I could still have Lyme despite the negative Western Blots on 2 different occasions?? If so, who do you recommend I see who really knows about Lyme and who actually cares about patients (a rarity today). I'm in Utah. Thanks for any insights.
Weakandfalling
Do you think I could still have Lyme despite the negative Western Blots on 2 different occasions?? If so, who do you recommend I see who really knows about Lyme and who actually cares about patients (a rarity today). I'm in Utah. Thanks for any insights.
Weakandfalling
Best Answer
I agree with pretty much everything Wonko says ... and to answer your two specific questions:
1--Can Lyme cause muscle wasting (I have it bad in my forearms and shoulders)?
I don't know -- my muscles aren't what they used to be either, and I think it's feeling so lousy that I don't do the things that I used to do, so I've lost muscle mass.
2--Do you think Johns-Hopkins is a good place to investigate? I'm thinking your answer would be "no" because it seems like mainstream American medicine does not offer good Lyme inquiry and treatment. Seems like going to a local Lyme specialist would be the answer, get ruled out for that first, then Johns-Hopkins if the Lyme answer is "no." Please let me know your opinion on Johns-Hopkins. I was thinking about that institution because, in case it is not Lyme either, maybe with a full workup there I could find out what is afflicting me.
I agree with your approach to find an LLMD first, and then if you get a clean bill of health, then go to Johns Hopkins for the 'big thinking' they do there.
Let us know how you do! Best wishes for a good doc, a good diagnosis, and a full recovery --
1--Can Lyme cause muscle wasting (I have it bad in my forearms and shoulders)?
I don't know -- my muscles aren't what they used to be either, and I think it's feeling so lousy that I don't do the things that I used to do, so I've lost muscle mass.
2--Do you think Johns-Hopkins is a good place to investigate? I'm thinking your answer would be "no" because it seems like mainstream American medicine does not offer good Lyme inquiry and treatment. Seems like going to a local Lyme specialist would be the answer, get ruled out for that first, then Johns-Hopkins if the Lyme answer is "no." Please let me know your opinion on Johns-Hopkins. I was thinking about that institution because, in case it is not Lyme either, maybe with a full workup there I could find out what is afflicting me.
I agree with your approach to find an LLMD first, and then if you get a clean bill of health, then go to Johns Hopkins for the 'big thinking' they do there.
Let us know how you do! Best wishes for a good doc, a good diagnosis, and a full recovery --
Post away as much as you want, it is normal to have a lot of questions when on a new "lead" for a diagnosis after an ordeal such as yours, and with Lyme & Co. it is particularly difficult in that you really do need to make the conscious decision to go against the grain of mainstream medicine to pursue diagnosis and treatment for chronic Lyme and other tick-borne infection.
I believe that once you have exhausted mainstream medicine, it is appropriate to pursue an ILADS-physician for consideration of Lyme. Any infectious disease doc at Hopkins will just tell you the status quo, that Lyme is "difficult to get, easy to cure." If you want to go to Hopkins for *other* specialties, I'd give a green light on that. But for the purpose of Lyme, as soon as you're considering chronic Lyme, you're through the looking glass so to speak and will not find any supporters of such a cause there.
Lyme patients refer to their doctors as "LLMDs," where the LL stands for "Lyme-literate." This label does not stem from a particular training or certification, it is a patient-assigned label (most Lyme doctors actually don't care for it!) that we use to designate docs who will consider clinical diagnosis (that is, based on symptoms, not tests) and who will administer long-term antibiotics, often in combination, and supporting treatments (as opposed to the mainstream Lyme treatment of 2-3 weeks of a single antibiotic).
LLMDs treat largely based on their own clinical experience, built from their own patient care. Of course groups like ILADS exist, so there is some formal professional organization, but by and large LLMD's are somewhat rogue and each approaches the diagnosis, treatment, and management of Lyme a bit differently.
Because these so-called "LLMDs" operate outside of mainstream and insurance guidelines, literally putting their medical licenses at risk, a usual path to finding one is to follow advice from JackieC above and take those links. Some patient site are large enough, and span enough geography, to maintain regional lists that can be supplied upon request. It is "taboo" to post the full names of LLMDs, again, because they are at risk and many prominent ones are, or have been, under scrutiny. Sadly, this also means that most do not accept any form of insurance, and thus many Lyme patients need to pay out-of-pocket for some or even all of their care.
Does it sound like you are joining a cult? I felt that way at first, but is really not the case. Of course, as with any group, there are some fringe members of the Lyme community (not the one here on MedHelp, I'm speaking in general). But there are also lots and lots of folks such as myself, who knew we were sick yet fell through diagnostic cracks. As I note above, for me trying antibiotic treatment seemed like a relatively low risk, high potential benefit situation. As for cost, well, my health had robbed me of the ability to work much, and my then part-time position was about to expire. So while I don't like paying out-of-pocket for office visits, I ultimately regained my health to support working, and in the end my ability to earn a salary is well-worth it to me.
As for the efficacy of antibiotics in treating other illnesses, I don't doubt it. There are a multitude of conditions for which the cause is unknown. I do not think that Lyme and MS are the same thing, but I do think it is possible that Lyme can trigger an MS-like condition (or a lupus-like condition, etc). As far as I know (you seem to know much more), the cause of ALS is not known, so it could be that, in some cases, it is triggered by Lyme.
I was not as sick as some, but I think it's fair to say that I was very sick before treatment. I was placed on steroids while undiagnosed, which is a big "No No" for Lyme, as steroids stop your immune system, allowing the underlying infection to get worse. It took me close to a year of treatment to undo the steroid damage. I'm just over the two-year mark treating, and continue to improve.
My Lyme serology was never definitive, and my LLMD speculates that another infection, also carried by ticks (referred to as "co-infections," as ticks can carry many diseases and bacteria in addition to Lyme) is my biggest issue. Co-infections may only respond to antibiotics distinct from those used to treat Lyme, and this is another reason why some people fail to get better from standard Lyme treatment: Not only may it be too short, but if co-infections are present, different antibiotics may be required to target them.
So my bottom line is I don't really know what happened to me. I do know it took years to progress, for a long time I had a series of symptoms that seemed unrelated, and none of which were serious enough to have much impact on my life. But in time there was a snowball effect, and my illness was no longer manageable, and that began my year-long quest for a diagnosis. Had I not made the decision to seek a Lyme doctor, I doubt very much that I would be where I am today. If anything, I think I would have eventually been given an incorrect diagnosis for a condition like lupus or MS, for which there is no curative treatment.
So do I have Lyme disease, or some other chronic infection that smoldered in my body for years before trying to take over my life? I may never have a satisfactory definitive answer for that. I consider myself fortunate for my recovery, and do my best to move on with life.
I see above you note an absence of joint pain. I do not think this rules out Lyme and co-infections. I was actually mostly free of joint pain until after my steroid treatment.
Lyme is systemic, so rather than focus on joint pain, I think it's more general to look for systemic systems. For example, neuro and heart symptoms, or skin problems and neuro symptoms, and so on. Anytime you see a pattern in which the symptoms experience seem too broad for a single disease, that to me is the red flag for infection. But again, at first it can be unclear, and I spent a year thinking I had a neurological disease because my symptoms were predominantly neurological.
As far as damage from Lyme being irreversible, I'm sure there is some truth to that but if you dig around for patient testimonies, you'll be amazed at from what point people return. I was a wreck, and I thought I was either dying slowly or was doomed to retire by 30 and spend the rest of my life as a burden on my family. I feel like the "Unsinkable Molly Brown" in terms of my ongoing comeback.
And in response to the side conversation, my trust in medical doctors has also suffered a terrible injury from my ordeal. I try to not even think back to the dismissive attitudes I faced in the office of many doctors and specialists, as it was terrible to endure that sort of doubt and lack of validation. I've grown to accept that the label of chronic Lyme I will never receive any validation from mainstream medicine, nor most people, some friends and family included. In my life it works best for me to hide my condition and only share details with those I know to be capable of understanding. For that reason, patient sites are of high value to me. It was through such contact that I finally got the nerve to book an appt with an LLMD.
Of course there is no guarantee that you have Lyme, but I'll repeat myself that antibiotic treatment is a relatively lost risk, high potential gain option.
I believe that once you have exhausted mainstream medicine, it is appropriate to pursue an ILADS-physician for consideration of Lyme. Any infectious disease doc at Hopkins will just tell you the status quo, that Lyme is "difficult to get, easy to cure." If you want to go to Hopkins for *other* specialties, I'd give a green light on that. But for the purpose of Lyme, as soon as you're considering chronic Lyme, you're through the looking glass so to speak and will not find any supporters of such a cause there.
Lyme patients refer to their doctors as "LLMDs," where the LL stands for "Lyme-literate." This label does not stem from a particular training or certification, it is a patient-assigned label (most Lyme doctors actually don't care for it!) that we use to designate docs who will consider clinical diagnosis (that is, based on symptoms, not tests) and who will administer long-term antibiotics, often in combination, and supporting treatments (as opposed to the mainstream Lyme treatment of 2-3 weeks of a single antibiotic).
LLMDs treat largely based on their own clinical experience, built from their own patient care. Of course groups like ILADS exist, so there is some formal professional organization, but by and large LLMD's are somewhat rogue and each approaches the diagnosis, treatment, and management of Lyme a bit differently.
Because these so-called "LLMDs" operate outside of mainstream and insurance guidelines, literally putting their medical licenses at risk, a usual path to finding one is to follow advice from JackieC above and take those links. Some patient site are large enough, and span enough geography, to maintain regional lists that can be supplied upon request. It is "taboo" to post the full names of LLMDs, again, because they are at risk and many prominent ones are, or have been, under scrutiny. Sadly, this also means that most do not accept any form of insurance, and thus many Lyme patients need to pay out-of-pocket for some or even all of their care.
Does it sound like you are joining a cult? I felt that way at first, but is really not the case. Of course, as with any group, there are some fringe members of the Lyme community (not the one here on MedHelp, I'm speaking in general). But there are also lots and lots of folks such as myself, who knew we were sick yet fell through diagnostic cracks. As I note above, for me trying antibiotic treatment seemed like a relatively low risk, high potential benefit situation. As for cost, well, my health had robbed me of the ability to work much, and my then part-time position was about to expire. So while I don't like paying out-of-pocket for office visits, I ultimately regained my health to support working, and in the end my ability to earn a salary is well-worth it to me.
As for the efficacy of antibiotics in treating other illnesses, I don't doubt it. There are a multitude of conditions for which the cause is unknown. I do not think that Lyme and MS are the same thing, but I do think it is possible that Lyme can trigger an MS-like condition (or a lupus-like condition, etc). As far as I know (you seem to know much more), the cause of ALS is not known, so it could be that, in some cases, it is triggered by Lyme.
I was not as sick as some, but I think it's fair to say that I was very sick before treatment. I was placed on steroids while undiagnosed, which is a big "No No" for Lyme, as steroids stop your immune system, allowing the underlying infection to get worse. It took me close to a year of treatment to undo the steroid damage. I'm just over the two-year mark treating, and continue to improve.
My Lyme serology was never definitive, and my LLMD speculates that another infection, also carried by ticks (referred to as "co-infections," as ticks can carry many diseases and bacteria in addition to Lyme) is my biggest issue. Co-infections may only respond to antibiotics distinct from those used to treat Lyme, and this is another reason why some people fail to get better from standard Lyme treatment: Not only may it be too short, but if co-infections are present, different antibiotics may be required to target them.
So my bottom line is I don't really know what happened to me. I do know it took years to progress, for a long time I had a series of symptoms that seemed unrelated, and none of which were serious enough to have much impact on my life. But in time there was a snowball effect, and my illness was no longer manageable, and that began my year-long quest for a diagnosis. Had I not made the decision to seek a Lyme doctor, I doubt very much that I would be where I am today. If anything, I think I would have eventually been given an incorrect diagnosis for a condition like lupus or MS, for which there is no curative treatment.
So do I have Lyme disease, or some other chronic infection that smoldered in my body for years before trying to take over my life? I may never have a satisfactory definitive answer for that. I consider myself fortunate for my recovery, and do my best to move on with life.
I see above you note an absence of joint pain. I do not think this rules out Lyme and co-infections. I was actually mostly free of joint pain until after my steroid treatment.
Lyme is systemic, so rather than focus on joint pain, I think it's more general to look for systemic systems. For example, neuro and heart symptoms, or skin problems and neuro symptoms, and so on. Anytime you see a pattern in which the symptoms experience seem too broad for a single disease, that to me is the red flag for infection. But again, at first it can be unclear, and I spent a year thinking I had a neurological disease because my symptoms were predominantly neurological.
As far as damage from Lyme being irreversible, I'm sure there is some truth to that but if you dig around for patient testimonies, you'll be amazed at from what point people return. I was a wreck, and I thought I was either dying slowly or was doomed to retire by 30 and spend the rest of my life as a burden on my family. I feel like the "Unsinkable Molly Brown" in terms of my ongoing comeback.
And in response to the side conversation, my trust in medical doctors has also suffered a terrible injury from my ordeal. I try to not even think back to the dismissive attitudes I faced in the office of many doctors and specialists, as it was terrible to endure that sort of doubt and lack of validation. I've grown to accept that the label of chronic Lyme I will never receive any validation from mainstream medicine, nor most people, some friends and family included. In my life it works best for me to hide my condition and only share details with those I know to be capable of understanding. For that reason, patient sites are of high value to me. It was through such contact that I finally got the nerve to book an appt with an LLMD.
Of course there is no guarantee that you have Lyme, but I'll repeat myself that antibiotic treatment is a relatively lost risk, high potential gain option.
This will be my last post for a while. Meant to mention that a couple of years ago I was put on antibiotics for something and actually noticed that I was beginning to have more energy than usual and was starting to feel back to normal. I wish I had pursued Lyme then. I have heard that once Lyme goes on for too long, the damage can be irreversible - correct?
Recently I heard in the news that someone treated for ALS died, but on autopsy it was found that he really had Lyme!
Last I will say that the ALS medicos are currently testing antibiotics in relation to ALS - a clinical study. Hmmmmm. Wouldn't it be interesting if not only the symptoms of ALS and Lyme are similar, but also the curative treatment of antibiotics? Wouldn't that be an incredible find for the ALS community!!
WAF
Recently I heard in the news that someone treated for ALS died, but on autopsy it was found that he really had Lyme!
Last I will say that the ALS medicos are currently testing antibiotics in relation to ALS - a clinical study. Hmmmmm. Wouldn't it be interesting if not only the symptoms of ALS and Lyme are similar, but also the curative treatment of antibiotics? Wouldn't that be an incredible find for the ALS community!!
WAF
Wow! I'm amazed! JackieCalif, I can relate to your experience of having one of your doctors discourage another doctor's inquiry into your condition, but have never heard of anything as severe as what you experienced: An ER doctor yanking out your IV and telling you to leave when you had serious heart irregularities??? Hope you weren't billed for that (but bet you were). Unfortunately another horrible trend I have noticed in American medicine is doctors feeling they are omniscient and can tell when someone is faking it or is a malingerer. Often they will assign that label to a patient when the doctors can't determine what is wrong. Or they may call a patient, "narcotic-seeking" just because he/she keeps asking for more pain medication (hint: the current dose or medication may not be adequate).
Wonko, thanks for your input! Maybe I've been "barking up the wrong tree" pursuing ALS diagnosis and ignoring Lyme. The thought of "regaining quality of life" is intriguing!
Can Lyme cause muscle wasting (I have it bad in my forearms and shoulders)?
Do you think Johns-Hopkins is a good place to investigate? I'm thinking your answer would be "no" because it seems like mainstream American medicine does not offer good Lyme inquiry and treatment. Seems like going to a local Lyme specialist would be the answer, get ruled out for that first, then Johns-Hopkins if the Lyme answer is "no." Please let me know your opinion on Johns-Hopkins. I was thinking about that institution because, in case it is not Lyme either, maybe with a full workup there I could find out what is afflicting me.
Thank you both for your helpful posts!
WAF
Wonko, thanks for your input! Maybe I've been "barking up the wrong tree" pursuing ALS diagnosis and ignoring Lyme. The thought of "regaining quality of life" is intriguing!
Can Lyme cause muscle wasting (I have it bad in my forearms and shoulders)?
Do you think Johns-Hopkins is a good place to investigate? I'm thinking your answer would be "no" because it seems like mainstream American medicine does not offer good Lyme inquiry and treatment. Seems like going to a local Lyme specialist would be the answer, get ruled out for that first, then Johns-Hopkins if the Lyme answer is "no." Please let me know your opinion on Johns-Hopkins. I was thinking about that institution because, in case it is not Lyme either, maybe with a full workup there I could find out what is afflicting me.
Thank you both for your helpful posts!
WAF
I know that JackieC mentions him above, but to reiterate, the name that comes to mind in regards to ALS/Lyme is Dr. David Martz. He was diagnosed with ALS, but was treated for Lyme disease and improved. He was featured in the Lyme disease documentary "Under Our Skin," and I also found this online video of him:
http://vimeo.com/2074932
I think that his case was an exception and not a rule, but it is an amazing tale. If you want to research more about possible Lyme/ALS connection/misdiagnosis, his name may be a good lead. I believe that he is retired now, but I think he did treat a number of ALS patients with antibiotics.
For what it's worth, I tested negative for Lyme over and over, including in my spinal fluid. I went forward with an ILADS physician, who made a clinical diagnosis of Lyme and co-infections, supported by non-standard tests. This course was against the advice of my primary care doc and about a dozen other docs/specialists. I was skeptical, but it seemed like a relatively low risk with a potentially high benefit. The treatment has paid off for me in a big way, and many of my neurological symptoms (I had lesions on MRI, but was never specifically diagnosed with a neuro condition) have resolved. I've resumed a challenging full-time career, and have regained a great deal of quality of life.
http://vimeo.com/2074932
I think that his case was an exception and not a rule, but it is an amazing tale. If you want to research more about possible Lyme/ALS connection/misdiagnosis, his name may be a good lead. I believe that he is retired now, but I think he did treat a number of ALS patients with antibiotics.
For what it's worth, I tested negative for Lyme over and over, including in my spinal fluid. I went forward with an ILADS physician, who made a clinical diagnosis of Lyme and co-infections, supported by non-standard tests. This course was against the advice of my primary care doc and about a dozen other docs/specialists. I was skeptical, but it seemed like a relatively low risk with a potentially high benefit. The treatment has paid off for me in a big way, and many of my neurological symptoms (I had lesions on MRI, but was never specifically diagnosed with a neuro condition) have resolved. I've resumed a challenging full-time career, and have regained a great deal of quality of life.
You're so very welcome. I think I had Lyme, a very low level case of it, for a few years, looking back on things. I was just tired all the time and had odd symptoms, like the bottoms of my feet hurting in the morning when I got out of bed. Then we were back east travelling around lots of leafy places, and I got suddenly and dramatically ill about 4-5 years ago. I made it back home to Calif. and started on the trail of docs to try to figure it out. I ended up in the ER twice in a week with serious heart irregularities, and the second time the doc, after being really nice at first, came in and rather roughly took the IV out of my arm and told me to leave. I figured out much later that she must have called my regular doc, who thought I was just low on hormones, and he told her I was attention-seeking or something and to ignore me.
I went through 20+ other docs over the next year or so. One very sympathetic endocrinologist ran a bunch of tests including Lyme, and it came back mildly positive. The doc said it didn't mean anything, but I took the test results and made an appointment with an LLMD ... got diagnosed ... and tho it's not been an easy road, treatment was well worth it. And it's not cheap, depending on what kind of insurance you have. But I couldn't think of anything more worth spending money on.
Personally, I think med schools are not looking for the right kinds of people to be future MDs: today's MDs are mostly all science and math wonks, which makes sense, but if their wonkiness gets in the way of their ability to connect the humanity dots, then IMO they are practicing science, not practicing medicine. I say this as someone with family and lifelong friends in the medical field -- I appreciate and respect what they do, but their blindspots are not just annoying, they are dangerous.
[Stepping off soap box now.] Don't give up -- you will find the right doc ... and then still have your antennae up for what the doc is saying and doing: even the best docs miss things and make mistakes ... they need feedback from us on everything, or they don't have all the data they need. It's when they ignore what we tell them that it goes wrong.
You hang in there! The internet is a treasure trove of information and connections, so we have that on our side. Do read Weintraub's book, esp about Dave Martz. The scientific parts of it were too much for me the first time, but they're not long and they don't interrupt the story, so you can skip them if they make your eyes cross. Later on when you're feeling better, then they will make more sense. Which reminds me, I've been meaning to read the book again ....
Take care!
I went through 20+ other docs over the next year or so. One very sympathetic endocrinologist ran a bunch of tests including Lyme, and it came back mildly positive. The doc said it didn't mean anything, but I took the test results and made an appointment with an LLMD ... got diagnosed ... and tho it's not been an easy road, treatment was well worth it. And it's not cheap, depending on what kind of insurance you have. But I couldn't think of anything more worth spending money on.
Personally, I think med schools are not looking for the right kinds of people to be future MDs: today's MDs are mostly all science and math wonks, which makes sense, but if their wonkiness gets in the way of their ability to connect the humanity dots, then IMO they are practicing science, not practicing medicine. I say this as someone with family and lifelong friends in the medical field -- I appreciate and respect what they do, but their blindspots are not just annoying, they are dangerous.
[Stepping off soap box now.] Don't give up -- you will find the right doc ... and then still have your antennae up for what the doc is saying and doing: even the best docs miss things and make mistakes ... they need feedback from us on everything, or they don't have all the data they need. It's when they ignore what we tell them that it goes wrong.
You hang in there! The internet is a treasure trove of information and connections, so we have that on our side. Do read Weintraub's book, esp about Dave Martz. The scientific parts of it were too much for me the first time, but they're not long and they don't interrupt the story, so you can skip them if they make your eyes cross. Later on when you're feeling better, then they will make more sense. Which reminds me, I've been meaning to read the book again ....
Take care!
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I'm so sorry your docs are doing what too many of mine did too: just blow it all off. What's good is: you aren't giving up finding out what's going on. I admire that spirit.
Whether you have Lyme, I don't know ... but I would be doing what you are doing until you get some real answers. Lyme affects everyone in slightly different ways, and if you don't have Lyme you might have something else that the same ticks carry.
There is a book by Pamela Weintraub, called 'Cure Unknown', now in paperback that you might find especially heartening. It's an awful title, but perhaps she means the cure is unknown for what ails our thickheaded medical community when it comes Lyme. There is a chapter about an MD who was himself told for years that he had ALS, and it turned out to be Lyme. He recovered. If you google/search "pamela weintraub cure unknown dave martz", the third hit down talks about him specifically.
About finding an LLMD (short for the slang term 'Lyme Literate MD', meaning an MD who 'gets it'), here are some websites, some with referral services. Also simply google/search "Utah LLMD" and you will find a lot of links, some of which may lead you to a good doc near you. Some of these have search functions just for finding an LLMD, but as you have already found, docs who take a broader view on the seriousness of Lyme and coinfections are not eager to plaster their names on billboards because of harrassment from state and local medical authorities. Also, if you get an LLMD that just doesn't seem right somehow, then switch. Even in mainstream medicine you get docs that just don't click, and it's true with Lyme even more, because it is the frontier of medicine.
ilads [dot] org
lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com
lymedisease [dot] org (California Lyme Disease Assn -- CALDA)
The first one, ILADS, is the main organization for LLMDs. Under the tab 'About Lyme' are Burrascano's 'Diagnostic Hints and Treatment Guidelines.' Well worth reading if you're up to it.
The CALDA website might be interesting just because they post good stuff, and have a magazine they will send if you become a member (doesn't cost a lot.)
Best wishes to you -- stay strong, and come back and visit with us, okay?
and PS about your tests being negative: the tests are notoriously inaccurate, and if you have been infected for a while, it's not uncommon for them to come back negative, because they measure antibodies to Lyme bacteria, not the bacteria themselves. Some time after infection, the immune system just gives up and assumes that the bugs must be dead, so it stops making antibodies, and so the tests come back negative, even though you could have a huge case of Lyme. Some LLMDs will give an 'antibiotic challenge', meaning a short course of abx, then retest, to see if the meds woke up your immune system. Mainly what LLMDs know that other docs don't is that the tests are lousy and treatment must be based on the old fashioned way of medicine: history and exam, then tests, to come to a diagnosis. Modern medicine relies too much imho on tests alone and thinks we're all just wacky if we feel sick but the tests are fine.