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What is your take on Lyme as a diagnosis for ongoing neuro issues?
I've been experiencing progressively worsening neurological issues for the past about 9 years of my life. The first issue I experienced was a loss of my sense of taste; food suddenly tasted like nothing one day when I was 14 years old. Then I started having issues pronouncing certain words, dizzy spells, issues with balance, trouble remembering words, a near inability to concentrate, difficulty processing new information, ringing in my right ear, excruciating 24/7 headaches, frequent urination (like every 20 minutes), brain fog, hand and tongue tremors, sensitivity to certain types of lighting, and a few other issues. Doctors can't figure out what's wrong with me. They usually just see that I'm 23 years old and conclude that it's all in my head because I'm too young to be seriously ill. Out of desperation, I went to an acupuncturist/herbalist, and he's telling me that my symptomology sounds consistent with Lyme Disease. I've looked into Lyme in the past, but I gave up on considering it as a viable option because it seemed like every symptom in the book was supposedly associated with Lyme kind of how you can attribute just about anything to anxiety, depression, or fibromyalgia.
Looking for opinions essentially. Is the talk about Lyme Disease in the alternative medicine sphere hype, or is there some validity to it? He told me that getting tested for it won't necessarily rule out the possibility of Lyme because the test yields a lot of false negatives and positives.
Looking for opinions essentially. Is the talk about Lyme Disease in the alternative medicine sphere hype, or is there some validity to it? He told me that getting tested for it won't necessarily rule out the possibility of Lyme because the test yields a lot of false negatives and positives.
At this moment I am having serious muscle weakness in my left arm , i am a lefty, so this will be short. It sounds like Bartonella a co- infection of Lyme which by the way is not hype. Best plan is to go to ILADS.org and read up on the symptoms and email them to find a Lyme literate doctor, LLMD, it will save you a lot of time and heartache if you know for sure. Others will give you more info.
Good luck.
Good luck.
I sent an email to ILADS asking if they could point me in the direction of a nearby LLMD. Thank you!
I agree, consulting a Lyme specialist (LLMD) is a good move. The herbalist you saw sees the bigger picture that regular MDs often miss due to the split in the medical community about Lyme and tickborne diseases generally.
Lyme is caused by a spiral-shaped bacterium, Borrelia burgdorferi, which is first cousins to the bacterium that causes syphilis, which in the olden days was known as the 'the Great Imitator', in that its symptoms are so variable from person to person. Lyme has that same characteristic, which makes it difficult to diagnose for docs not wise to its tricks. And, as mentioned above, Lyme often comes with 'bonus' diseases not related to Lyme, but carried by the same ticks. AND to really confuse things, each person's immune system reacts differently to Lyme and whichever co-infections are present. No wonder the docs are confused, but worse: too many of them just don't take Lyme seriously because of early research done that didn't appreciate the complexity of the illness, and sadly, the docs who made their reputations on that early work are still around ... defending their reputations.
ILADS is the group with a broader and more open-minded approach to diagnosing and treating Lyme. It's a voluntary group for docs who think those bigger thoughts, but because it's still a developing area, some of the docs who specialize in Lyme can be ... odd and with some fixed ideas that they truly believe (about treatment especially). So if the doc you see seems odd, or you'd like to run past us (all of us here have had or thought we had Lyme and coinfection(s), as far as I know), so we're happy to give our thoughts on what tests and treatments your LLMD proposes.
One suggestion: always get hard copies of ALL test results your doc has run. I think by law you are entitled to copies, but sometimes you have to ask for them, and be sure they give you ALL the pages -- I find doc's staffs often to be either lazy or watching the copier budget too closely -- but you paid for the tests, and a future doc might find them useful to see into the past. I find that getting copies later, and getting complete ones, is not easy, and you never know if the staff has made the decision to go to lunch instead of copying ALL the pages in your file.
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On another aspect of your post, the herbalist is wise to say that the standard tests are not all that accurate (called Western blot and ELISA), but there is another test called PCR offered by a lab called IGeneX that an LLMD often orders -- it's more accurate because it looks for direct evidence of Lyme DNA in your blood and not just for your immune system's reaction to Lyme bacteria (Lyme bugs can suppress the immune system reaction among other things.)
NonLLMDs don't like, don't trust, and generally won't use the PCR tests because they believe the W.blot and ELISA tests are sufficient. Thus the importance of finding the right doc.
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I'll stop the lecture here, but wanted to give you a little heads up to the complexity that is not only Lyme the disease, but also Lyme and the medical community.
Feel free to stop back here as things move along, and let us know how you're doing -- best wishes to you -- and your herbalist might also be helpful going forward, because herbs can be useful in Lyme+ treatment, but personally I would still go for antibiotics, supported by herbs. It worked for me.
Take care -- good for you for pursuing this!
Lyme is caused by a spiral-shaped bacterium, Borrelia burgdorferi, which is first cousins to the bacterium that causes syphilis, which in the olden days was known as the 'the Great Imitator', in that its symptoms are so variable from person to person. Lyme has that same characteristic, which makes it difficult to diagnose for docs not wise to its tricks. And, as mentioned above, Lyme often comes with 'bonus' diseases not related to Lyme, but carried by the same ticks. AND to really confuse things, each person's immune system reacts differently to Lyme and whichever co-infections are present. No wonder the docs are confused, but worse: too many of them just don't take Lyme seriously because of early research done that didn't appreciate the complexity of the illness, and sadly, the docs who made their reputations on that early work are still around ... defending their reputations.
ILADS is the group with a broader and more open-minded approach to diagnosing and treating Lyme. It's a voluntary group for docs who think those bigger thoughts, but because it's still a developing area, some of the docs who specialize in Lyme can be ... odd and with some fixed ideas that they truly believe (about treatment especially). So if the doc you see seems odd, or you'd like to run past us (all of us here have had or thought we had Lyme and coinfection(s), as far as I know), so we're happy to give our thoughts on what tests and treatments your LLMD proposes.
One suggestion: always get hard copies of ALL test results your doc has run. I think by law you are entitled to copies, but sometimes you have to ask for them, and be sure they give you ALL the pages -- I find doc's staffs often to be either lazy or watching the copier budget too closely -- but you paid for the tests, and a future doc might find them useful to see into the past. I find that getting copies later, and getting complete ones, is not easy, and you never know if the staff has made the decision to go to lunch instead of copying ALL the pages in your file.
=============
On another aspect of your post, the herbalist is wise to say that the standard tests are not all that accurate (called Western blot and ELISA), but there is another test called PCR offered by a lab called IGeneX that an LLMD often orders -- it's more accurate because it looks for direct evidence of Lyme DNA in your blood and not just for your immune system's reaction to Lyme bacteria (Lyme bugs can suppress the immune system reaction among other things.)
NonLLMDs don't like, don't trust, and generally won't use the PCR tests because they believe the W.blot and ELISA tests are sufficient. Thus the importance of finding the right doc.
=====================
I'll stop the lecture here, but wanted to give you a little heads up to the complexity that is not only Lyme the disease, but also Lyme and the medical community.
Feel free to stop back here as things move along, and let us know how you're doing -- best wishes to you -- and your herbalist might also be helpful going forward, because herbs can be useful in Lyme+ treatment, but personally I would still go for antibiotics, supported by herbs. It worked for me.
Take care -- good for you for pursuing this!
.... and to answer your initial question about Lyme as a possible cause of neurological symptoms:
Yes. Definitely yes. Different in each person, and some people have so much body pain that they don't really notice the neuro symptoms, others have both, some predominantly neuro. Different.
I had a balance of symptoms, about half neuro and half muscle/nerve/body generally. Also there are different strains of Lyme, and some of them have more neuro effect, others less.
I've described my symptoms as feeling like a combination of a bad hangover and a bad case of the body flu (not stomach type flu, just aching.) But everyone's different.
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... and one more note: the longer you've been infected, the less likely the standard W.blot and ELISA tests are to come back as a false negative, meaning you're infected but the tests are negative. Thus the usefulness of the IGeneX PCR test.
Yes. Definitely yes. Different in each person, and some people have so much body pain that they don't really notice the neuro symptoms, others have both, some predominantly neuro. Different.
I had a balance of symptoms, about half neuro and half muscle/nerve/body generally. Also there are different strains of Lyme, and some of them have more neuro effect, others less.
I've described my symptoms as feeling like a combination of a bad hangover and a bad case of the body flu (not stomach type flu, just aching.) But everyone's different.
=====
... and one more note: the longer you've been infected, the less likely the standard W.blot and ELISA tests are to come back as a false negative, meaning you're infected but the tests are negative. Thus the usefulness of the IGeneX PCR test.
Thank you for all of the information and suggestions! I'll definitely keep it all in mind if I'm about to get into contact with an LLMD.
Let me ask you all this: what is your stance on treating Lyme with herbal remedies. The herbalist I'm seeing now has prescribed me Lightning Pearls by Classical Pearls and seems confident that the formula along with a few other formulas that he will prescribe in the future will help me get better over the course of the next several months. I felt very brain fogged (almost disoriented) and off-balanced after taking the formula, which I suppose could be a good or bad sign; at least it's evidence that it's doing something in my body and isn't the herbal equivalent of a sugar pill, eh? haha.
I just desperately want to know what will work so I can do it and quit trying out a million different things to no avail. I've already spent so much money on doctors who have more or less told me that everything was in my head. I've spent hundreds over the past couple of months alone to sit down and talk to doctors for a few minutes at a time just to hear "It's all anxiety. Here's some Xanax." or "Let's just wait another 5 months and see how you feel then." This herbalist isn't cheap either at $65 a visit plus the cost of his herbs. I can imagine being treated by an LLMD would be pretty dang expensive too. I work from home doing very low-paying Internet jobs because I feel too ill to leave my house quite often, and I just literally don't have the money to try out too many other things that "might" but most likely won't work. So yeah...continue or discontinue the acupuncture/herbal route? Thoughts?
Let me ask you all this: what is your stance on treating Lyme with herbal remedies. The herbalist I'm seeing now has prescribed me Lightning Pearls by Classical Pearls and seems confident that the formula along with a few other formulas that he will prescribe in the future will help me get better over the course of the next several months. I felt very brain fogged (almost disoriented) and off-balanced after taking the formula, which I suppose could be a good or bad sign; at least it's evidence that it's doing something in my body and isn't the herbal equivalent of a sugar pill, eh? haha.
I just desperately want to know what will work so I can do it and quit trying out a million different things to no avail. I've already spent so much money on doctors who have more or less told me that everything was in my head. I've spent hundreds over the past couple of months alone to sit down and talk to doctors for a few minutes at a time just to hear "It's all anxiety. Here's some Xanax." or "Let's just wait another 5 months and see how you feel then." This herbalist isn't cheap either at $65 a visit plus the cost of his herbs. I can imagine being treated by an LLMD would be pretty dang expensive too. I work from home doing very low-paying Internet jobs because I feel too ill to leave my house quite often, and I just literally don't have the money to try out too many other things that "might" but most likely won't work. So yeah...continue or discontinue the acupuncture/herbal route? Thoughts?
I searched this forum for "herbs" and came across a thread concerning the dangers of taking artemisinin, a form of the herb artemisia. I looked at the herbal formula I've been taking, and while it does not mention artemisinin, it does mention artemisia. To be exact, it says, "Artemisia apiacea (qinghao).
Anyone know anything about the safety or lack thereof of this herb?
I hate that I've become so fearful and wary of anything I put into my body, but my body already does so many strange things, and I don't need anymore issues. If the consensus is that these herbs may be harmful, then perhaps it's time to call up the herbalist and let him know I'm no longer coming to see him.
Anyone know anything about the safety or lack thereof of this herb?
I hate that I've become so fearful and wary of anything I put into my body, but my body already does so many strange things, and I don't need anymore issues. If the consensus is that these herbs may be harmful, then perhaps it's time to call up the herbalist and let him know I'm no longer coming to see him.
I was bit by a tick in 2010, it left a target like mark and I was tested, and the test came back negative. I had always hear that they sometime came back false positive but I didn't realize they came back false negative. I had several health issues to develop within a few months after the bite. I have even jokely said the tick bite was the start of my down fall. So from what I am reading, it could have some truth in it. How do you find out if it is lyme disease or not after this long?
I have not used herbals as a main treatment -- only as supplements my broad-minded doc recommended.
As to artemisia vs artemisinin, I don't know enough to comment fully, but others here do. I think artemisinin is a concentrated version of the herb, and the other is just the herb in an unconcentrated (natural) form.
You might post a new question on this site focussing on that question: something like "Artemisia vs Artemisinin -- ?" because that would catch the eye of someone who is familiar with the topic.
As to artemisia vs artemisinin, I don't know enough to comment fully, but others here do. I think artemisinin is a concentrated version of the herb, and the other is just the herb in an unconcentrated (natural) form.
You might post a new question on this site focussing on that question: something like "Artemisia vs Artemisinin -- ?" because that would catch the eye of someone who is familiar with the topic.
Thanks, Jackie :) I'm going to start a thread on the topic of herbal remedies in a bit. :)
Welcome.
You ask a good question, and I too would look for a second opinion from a Lyme specialist. The difficulty is finding one, because there is a huge split in the medical community.
One side of the medical community (which you have already experienced, it seems) relies on the original, basic Western blot and ELISA tests, which are not very accurate, esp. the longer it's been since your initial infection.
There is another test that is more accurate, but 'regular' docs don't generally use it, because they think the W.blot/ELISA tests are fine. It's called a PCR test and is available from IGeneX labs in Palo Alto CA. (They have a website.) I think a doc has to order the test, but I'm not sure, since my doc ordered it when I was sick.
To find a Lyme specialist (sometimes called an LLMD by patients, which is slang for 'Lyme Literate MD', meaning a doc who thinks more progressively about Lyme, its diagnosis and treatment. You can send an email to
contact [at] ILADS [dot] org
and tell them what area you live in, or near what big city, etc., and they can send you names of nearby docs. ILADS is the main voluntary group for LLMDs. They are based in NYC, but have doctor-members all over, tho some are little far out there, based on comments I have read ... but you only know that after you consult with the doc. Luck of the draw.
Also you can do a search online for
LLMD Lexington KY
or whatever area you are in or can travel to. You'll likely find posts on other websites that will lead you to possible docs.
I just did a quick search for
LLMD Kentucky
and got lots and lots of hits.
In some states, LLMDs keep a VERY low profile because the state/local medical board threaten LLMDs with loss of their medical licenses for treating Lyme aggressively. That's a second step, however: the first step is getting a proper diagnosis, because about half the time, the tick that carry Lyme also carry other nasty diseases that need separate diagnosis and treatment that is often less controversial than Lyme treatment. (Lyme treatment in the hands of an LLMD is often quite lengthy for reasons to do with the ability of the Lyme bacteria to hide in the body and avoid the antibiotics.)
That's why it takes an LLMD: regular docs think Lyme is a 'regular' disease that's killed by a couple weeks of antibiotics, but it often/usually takes months, esp. if you have been infected for years. (That's what the medical boards balk at -- lengthy treatment -- but standard treatment for some other diseases like tuberculosis is minimum 18 months.)
It sounds like your earlier doc is mainstream, and the mainstream approach to Lyme is that a couple weeks of antibiotics is a complete cure, and never mind any co-infections the tick may have brought with it.
If there's something you don't like about the first LLMD you see, go to another one ... some of them are kind of fringe, since Lyme diagnosis and treatment is still a developing area. Keep you antenna up and you'll be okay. The more you can learn about Lyme yourself, the better, because it will help you keep an eye on your doc.
Good for you for looking into this -- let us know how we can help.
You ask a good question, and I too would look for a second opinion from a Lyme specialist. The difficulty is finding one, because there is a huge split in the medical community.
One side of the medical community (which you have already experienced, it seems) relies on the original, basic Western blot and ELISA tests, which are not very accurate, esp. the longer it's been since your initial infection.
There is another test that is more accurate, but 'regular' docs don't generally use it, because they think the W.blot/ELISA tests are fine. It's called a PCR test and is available from IGeneX labs in Palo Alto CA. (They have a website.) I think a doc has to order the test, but I'm not sure, since my doc ordered it when I was sick.
To find a Lyme specialist (sometimes called an LLMD by patients, which is slang for 'Lyme Literate MD', meaning a doc who thinks more progressively about Lyme, its diagnosis and treatment. You can send an email to
contact [at] ILADS [dot] org
and tell them what area you live in, or near what big city, etc., and they can send you names of nearby docs. ILADS is the main voluntary group for LLMDs. They are based in NYC, but have doctor-members all over, tho some are little far out there, based on comments I have read ... but you only know that after you consult with the doc. Luck of the draw.
Also you can do a search online for
LLMD Lexington KY
or whatever area you are in or can travel to. You'll likely find posts on other websites that will lead you to possible docs.
I just did a quick search for
LLMD Kentucky
and got lots and lots of hits.
In some states, LLMDs keep a VERY low profile because the state/local medical board threaten LLMDs with loss of their medical licenses for treating Lyme aggressively. That's a second step, however: the first step is getting a proper diagnosis, because about half the time, the tick that carry Lyme also carry other nasty diseases that need separate diagnosis and treatment that is often less controversial than Lyme treatment. (Lyme treatment in the hands of an LLMD is often quite lengthy for reasons to do with the ability of the Lyme bacteria to hide in the body and avoid the antibiotics.)
That's why it takes an LLMD: regular docs think Lyme is a 'regular' disease that's killed by a couple weeks of antibiotics, but it often/usually takes months, esp. if you have been infected for years. (That's what the medical boards balk at -- lengthy treatment -- but standard treatment for some other diseases like tuberculosis is minimum 18 months.)
It sounds like your earlier doc is mainstream, and the mainstream approach to Lyme is that a couple weeks of antibiotics is a complete cure, and never mind any co-infections the tick may have brought with it.
If there's something you don't like about the first LLMD you see, go to another one ... some of them are kind of fringe, since Lyme diagnosis and treatment is still a developing area. Keep you antenna up and you'll be okay. The more you can learn about Lyme yourself, the better, because it will help you keep an eye on your doc.
Good for you for looking into this -- let us know how we can help.
Thank you. :) I did send an email to that address earlier and am just waiting on a reply now. I fear that the nearest LLMD will most likely be in Atlanta since I don't live near any major cities, which would essentially cancel out any chances of ever seeing an LLMD. Atlanta is a 5+ hour drive, and I don't drive myself anywhere that's anywhere over an hour away because driving is one thing that definitely exacerbates my symptoms, and I just can't tolerate it in long stretches. I've had several instances where I thought I was going to crash before I made it to my destination because I just felt so utterly off-balanced behind the wheel. My dad thinks Lyme is a BS potential diagnosis and straight up told me to quit going to the acupuncturist/herbalist because he's a "quack" after I told him that he had mentioned the disease, so no chances that he'd be willing to drive me. We'll see what they say, though! Maybe I'll luck out, and there will be someone closer.
You're welcome! yeah, I got the same 'it's BS' reaction from some people too, including a bunch of docs, but glad I stuck it out. And if it turns out not to be Lyme+, then at least you can rest easy and look at other possibilities. But Lyme is verrrrry common these days ....
Yeah, you never know where a Lyme doc is tucked away. There seems to be a self-selecting process that MDs go through when they decide to make a career at a major medical center or university medical center: they become VERY political, and to be sure they don't mess up their ever-upward road in the hierarchy, they go along to get along by adopting the IDSA Lyme approach. [IDSA is the Infectious Disease Society of America, the main group of docs who would in any other field be the authorities, but unfortunately, the IDSA docs are stuck on stoopid when it comes to Lyme and they haven't updated their research for decades ... which is why ILADS (International Lyme and Associated Disease Society, the main LLMD group) set up their own organization.]
Are you familiar with the movie 'Under Our Skin'? It's a documentary now on DVD and maybe online (not sure) about some real-life Lyme patients. I recommend it, tho be warned that the patients who are shown as really, really sick in the movie are far worse than most people ever get. So don't be afraid you will get that bad .... but it might help your father understand, because the movie explains some of the 'politics of Lyme' and the sneakiness of the disease.
Take care, and let us know what you do and how it goes. Hang in there!!! The worst thing you will find out is that you don't have Lyme -- and that's a pretty good outcome, when you think about it. :)
Yeah, you never know where a Lyme doc is tucked away. There seems to be a self-selecting process that MDs go through when they decide to make a career at a major medical center or university medical center: they become VERY political, and to be sure they don't mess up their ever-upward road in the hierarchy, they go along to get along by adopting the IDSA Lyme approach. [IDSA is the Infectious Disease Society of America, the main group of docs who would in any other field be the authorities, but unfortunately, the IDSA docs are stuck on stoopid when it comes to Lyme and they haven't updated their research for decades ... which is why ILADS (International Lyme and Associated Disease Society, the main LLMD group) set up their own organization.]
Are you familiar with the movie 'Under Our Skin'? It's a documentary now on DVD and maybe online (not sure) about some real-life Lyme patients. I recommend it, tho be warned that the patients who are shown as really, really sick in the movie are far worse than most people ever get. So don't be afraid you will get that bad .... but it might help your father understand, because the movie explains some of the 'politics of Lyme' and the sneakiness of the disease.
Take care, and let us know what you do and how it goes. Hang in there!!! The worst thing you will find out is that you don't have Lyme -- and that's a pretty good outcome, when you think about it. :)
Yeah, my dad told me that Lyme was something that "people who are out in the woods a lot get," and when I told him that wasn't necessarily true, he rolled his eyes and told me to have fun spending all of my money going to see quack doctors, heh. He's of the opinion that I'm making everything up in my head, though, so it would be pretty impossible to convince him I had anything.
I hate that so many doctors view Lyme as a BS diagnosis because, if there are no LLMDs in my area, I would at least like to ask "regular" doctors to test me using the tests they do use, and I'm so over that "this one's a headcase" look doctors give me when I tell them about conditions I've been researching online. I've already gotten enough of that when I tried explaining to doctors that I was concerned about the possibility of a brain tumor or a seizure disorder.I don't appreciate being looked at like I'm crazy for trying to do what I can to get to the bottom of my issues since nobody else has any answers for me. What can you do, though?
I have heard of that documentary but haven't watched it. I'm a bit afraid to because I already have so much health anxiety and don't really want to know what other symptoms may be in store for me in the future. I'll consider it, though; thanks. :)
I'll do my best to update you all on my situation from time to time. :)
I hate that so many doctors view Lyme as a BS diagnosis because, if there are no LLMDs in my area, I would at least like to ask "regular" doctors to test me using the tests they do use, and I'm so over that "this one's a headcase" look doctors give me when I tell them about conditions I've been researching online. I've already gotten enough of that when I tried explaining to doctors that I was concerned about the possibility of a brain tumor or a seizure disorder.I don't appreciate being looked at like I'm crazy for trying to do what I can to get to the bottom of my issues since nobody else has any answers for me. What can you do, though?
I have heard of that documentary but haven't watched it. I'm a bit afraid to because I already have so much health anxiety and don't really want to know what other symptoms may be in store for me in the future. I'll consider it, though; thanks. :)
I'll do my best to update you all on my situation from time to time. :)
I knew you would get a lot of replies and I was right. My arm is better now but the first time that happened it freaked me out.
Regarding herbs, I was thinking of switching to all herbs but my LLMD told me that in her practice she found a very low success rate. I take a combination. You must also make sure those herbs are produced in the correct way. Check out Dr Zhang NYC. A Harvard educated LLMD who only works with herbs that he produces for quality control. I can tell you that a few of his herbs ( like for sleep) work like magic. Good luck
Regarding herbs, I was thinking of switching to all herbs but my LLMD told me that in her practice she found a very low success rate. I take a combination. You must also make sure those herbs are produced in the correct way. Check out Dr Zhang NYC. A Harvard educated LLMD who only works with herbs that he produces for quality control. I can tell you that a few of his herbs ( like for sleep) work like magic. Good luck
Just received this in my inbox: "Any doctor who is brave enough to treat Lyme aggressively in GA has been attacked by the state medical Board. So, your best advice is to figure out how far you can travel to regain your health. I have a doctor in Raleigh. There are more options the farther you travel North. Let me know."
So there goes that. I just can't afford to travel out of state to seek treatment for a disease I might not even have.
I did send Dr. Zhang an email asking his opinion on the Classical Pearls formulas; thanks mojogal. :)
So there goes that. I just can't afford to travel out of state to seek treatment for a disease I might not even have.
I did send Dr. Zhang an email asking his opinion on the Classical Pearls formulas; thanks mojogal. :)
I hear you.
The too-common position held even in the medical community about Lyme is that only hunters etc. who are in the woods a lot get Lyme, and also that Lyme doesn't exist outside New England (NE US) and some limited areas of the West Coast. Wrong, and wrong. Ticks can't read maps and go pretty much wherever they like.
Columbia University Medical Center in NYC (hardly a bunch of quacks) has a Lyme research center and a big website about it. Maybe if your father looked at that he would see that it's not quackery, it's cutting-edge medicine. Columbia focuses on research and not treatment so much, I think, but I've never spoken with anyone was treated or tried to be treated there, so dunno for sure. But Columbia is no fly-by-night operation. If you search
columbia university lyme
the first hit you get will be it. The subtopics shown on the search page under that listing are:
-- Message from the Director;
-- Controversy;
-- Lyme and Tick-Borne Diseases Research Center;
-- Current/Recent Research Studies;
-- Why is Chronic Lyme chronic?; and
-- Symptoms and Signs.
There is a lot of information there, and Columbia is hardly shilling for fly-by-night quack docs. That might help your father understand and give you some useful data too.
About where Lyme is acquired, I'm no woodsy owl, live in a concrete apartment building in a city, and managed to get Lyme back East touring college campuses. Never saw the tick, never had a rash, just got terribly ill. 20+ docs later, I (finally) had a diagnosis.
Even the CDC, Centers for Disease Control, says Lyme is the fastest growing infectious disease in the US, and the CDC has no love for Lyme docs. That's where the breakpoint is: everyone agrees Lyme is everywhere and is a big problem, but the split in the medical community is how to diagnose and how to treat.
So ... your local docs may agree to order the basic tests (Western blot and ELISA), but the tests are lousy, and the CDC has set the standards for what is a positive test very very high, because the CDC studies epidemics, not people. The CDC wants its data to be pure and not accidentally scoop up other diseases, so they purposely made the standard difficult ... but it is acknowledged this approach misses many infected people. There's also another complication that a vaccine against Lyme was created some years ago (and sadly, didn't work), but in the process, one of the markers shown in the standard Lyme tests was eliminated because it also lit up on the tests in people who had had the vaccine. Again, to keep the data pure, the CDC eliminated that 'band' on the test, which is silly because the vaccine isn't used at all anymore. The tests are not a yes/no, stop/go, you have it/you don't kind of test -- it looks for the reaction of your immune system to Lyme bacteria, and not everyone makes immune antibodies, esp. a while after infection. Bottom line: the tests are supposed to be used only in conjunction with clinical diagnosis of your history and symptoms, not instead of your history...and even then, the tests are lousy.
So do get tested by your local docs, but do NOT assume that a negative result means you don't have Lyme. And the Lyme test will not look for other diseases that the ticks often carry. Not to discourage you, but if you get a negative test, you will then still not know if you have Lyme. That doesn't mean don't get the test done, but just be aware that it is NOT the last word, tho the local docs may say that it is. Lyme is supposed to be a clinical diagnosis (based on history and symptoms), not on one lousy test.
About 'Under Our Skin', I absolutely agree with you about not needing more scary information, and you are wise to know that you are already on high alert. It's the illness that does that: Lyme messes with the endocrine (hormonal) system, and makes people nervous and anxious as a direct effect of the infection. Of course, docs who don't know Lyme don't know this, and assume patients who test negative on the Western blot and ELISA are just ... anxious attention-seekers.
However, the movie has (so I'm told) added a section at the end showing how the patients in the movie are doing after treatment, and I'm glad. I saw the movie at a preview before that new section was added, and I was very concerned for people who had or suspected Lyme and would think they too would have the awful symptoms some of the people in the movie do. Not everyone does, and the movie was going for effect, but I thought it was cruel and a disservice to those of us with Lyme not to point out that not everyone gets that bad off. I was well into treatment and getting better when I saw the movie, but it really upset me that others in more fragile condition would think that they would get the awful symptoms shown in the movie. (After the showing I went to, a bunch of people went up on stage in the small theater and took questions from the audience, but no one introduced them, and it was only much later I learned that the healthy, lively people on the stage were the same people shown IN THE MOVIE, the real actual people. They looked so much better I didn't recognize them, esp in the not very well lit theater.) fwiw.
So that's a long way to say, I certainly understand why you don't want the added anxiety of seeing the stories of really ill people --- it can be disturbing indeed.
So bottom line (sorry to ramble), if the only path you have is to get tested by Western blot and ELISA by a nonLLMD, then I would do it (tho I'm not medically trained, so this is just opinion!) If the result comes back positive, then you have ammunition to take the next step and find an LLMD for treatment, with your father's understanding and support, and your own peace of mind. If the result comes back negative, tho, then getting tested by PCR from IGeneX and finding an LLMD is the next step. This two step process works, as long as you don't give up after the first step if the results are negative.
And then, if you do come back positive on the W.blot/ELISA, nonLLMDs are not likely to test for co-infections, and for Lyme are likely to hand over only a few weeks of antibiotics, which is insufficient in an established infection. So you would need to see an LLMD, but a positive W.blot/ELISA may give you the leverage you need to get some help from your father in making all this happen.
Take care, and let us know how you do, okay? Best to you -- you've got game!
Yeah, my dad told me that Lyme was something that "people who are out in the woods a lot get," and when I told him that wasn't necessarily true, he rolled his eyes and told me to have fun spending all of my money going to see quack doctors, heh. He's of the opinion that I'm making everything up in my head, though, so it would be pretty impossible to convince him I had anything.
I hate that so many doctors view Lyme as a BS diagnosis because, if there are no LLMDs in my area, I would at least like to ask "regular" doctors to test me using the tests they do use, and I'm so over that "this one's a headcase" look doctors give me when I tell them about conditions I've been researching online. I've already gotten enough of that when I tried explaining to doctors that I was concerned about the possibility of a brain tumor or a seizure disorder.I don't appreciate being looked at like I'm crazy for trying to do what I can to get to the bottom of my issues since nobody else has any answers for me. What can you do, though?
I have heard of that documentary but haven't watched it. I'm a bit afraid to because I already have so much health anxiety and don't really want to know what other symptoms may be in store for me in the future. I'll consider it, though; thanks. :)
I'll do my best to update you all on my situation from time to time. :)
The too-common position held even in the medical community about Lyme is that only hunters etc. who are in the woods a lot get Lyme, and also that Lyme doesn't exist outside New England (NE US) and some limited areas of the West Coast. Wrong, and wrong. Ticks can't read maps and go pretty much wherever they like.
Columbia University Medical Center in NYC (hardly a bunch of quacks) has a Lyme research center and a big website about it. Maybe if your father looked at that he would see that it's not quackery, it's cutting-edge medicine. Columbia focuses on research and not treatment so much, I think, but I've never spoken with anyone was treated or tried to be treated there, so dunno for sure. But Columbia is no fly-by-night operation. If you search
columbia university lyme
the first hit you get will be it. The subtopics shown on the search page under that listing are:
-- Message from the Director;
-- Controversy;
-- Lyme and Tick-Borne Diseases Research Center;
-- Current/Recent Research Studies;
-- Why is Chronic Lyme chronic?; and
-- Symptoms and Signs.
There is a lot of information there, and Columbia is hardly shilling for fly-by-night quack docs. That might help your father understand and give you some useful data too.
About where Lyme is acquired, I'm no woodsy owl, live in a concrete apartment building in a city, and managed to get Lyme back East touring college campuses. Never saw the tick, never had a rash, just got terribly ill. 20+ docs later, I (finally) had a diagnosis.
Even the CDC, Centers for Disease Control, says Lyme is the fastest growing infectious disease in the US, and the CDC has no love for Lyme docs. That's where the breakpoint is: everyone agrees Lyme is everywhere and is a big problem, but the split in the medical community is how to diagnose and how to treat.
So ... your local docs may agree to order the basic tests (Western blot and ELISA), but the tests are lousy, and the CDC has set the standards for what is a positive test very very high, because the CDC studies epidemics, not people. The CDC wants its data to be pure and not accidentally scoop up other diseases, so they purposely made the standard difficult ... but it is acknowledged this approach misses many infected people. There's also another complication that a vaccine against Lyme was created some years ago (and sadly, didn't work), but in the process, one of the markers shown in the standard Lyme tests was eliminated because it also lit up on the tests in people who had had the vaccine. Again, to keep the data pure, the CDC eliminated that 'band' on the test, which is silly because the vaccine isn't used at all anymore. The tests are not a yes/no, stop/go, you have it/you don't kind of test -- it looks for the reaction of your immune system to Lyme bacteria, and not everyone makes immune antibodies, esp. a while after infection. Bottom line: the tests are supposed to be used only in conjunction with clinical diagnosis of your history and symptoms, not instead of your history...and even then, the tests are lousy.
So do get tested by your local docs, but do NOT assume that a negative result means you don't have Lyme. And the Lyme test will not look for other diseases that the ticks often carry. Not to discourage you, but if you get a negative test, you will then still not know if you have Lyme. That doesn't mean don't get the test done, but just be aware that it is NOT the last word, tho the local docs may say that it is. Lyme is supposed to be a clinical diagnosis (based on history and symptoms), not on one lousy test.
About 'Under Our Skin', I absolutely agree with you about not needing more scary information, and you are wise to know that you are already on high alert. It's the illness that does that: Lyme messes with the endocrine (hormonal) system, and makes people nervous and anxious as a direct effect of the infection. Of course, docs who don't know Lyme don't know this, and assume patients who test negative on the Western blot and ELISA are just ... anxious attention-seekers.
However, the movie has (so I'm told) added a section at the end showing how the patients in the movie are doing after treatment, and I'm glad. I saw the movie at a preview before that new section was added, and I was very concerned for people who had or suspected Lyme and would think they too would have the awful symptoms some of the people in the movie do. Not everyone does, and the movie was going for effect, but I thought it was cruel and a disservice to those of us with Lyme not to point out that not everyone gets that bad off. I was well into treatment and getting better when I saw the movie, but it really upset me that others in more fragile condition would think that they would get the awful symptoms shown in the movie. (After the showing I went to, a bunch of people went up on stage in the small theater and took questions from the audience, but no one introduced them, and it was only much later I learned that the healthy, lively people on the stage were the same people shown IN THE MOVIE, the real actual people. They looked so much better I didn't recognize them, esp in the not very well lit theater.) fwiw.
So that's a long way to say, I certainly understand why you don't want the added anxiety of seeing the stories of really ill people --- it can be disturbing indeed.
So bottom line (sorry to ramble), if the only path you have is to get tested by Western blot and ELISA by a nonLLMD, then I would do it (tho I'm not medically trained, so this is just opinion!) If the result comes back positive, then you have ammunition to take the next step and find an LLMD for treatment, with your father's understanding and support, and your own peace of mind. If the result comes back negative, tho, then getting tested by PCR from IGeneX and finding an LLMD is the next step. This two step process works, as long as you don't give up after the first step if the results are negative.
And then, if you do come back positive on the W.blot/ELISA, nonLLMDs are not likely to test for co-infections, and for Lyme are likely to hand over only a few weeks of antibiotics, which is insufficient in an established infection. So you would need to see an LLMD, but a positive W.blot/ELISA may give you the leverage you need to get some help from your father in making all this happen.
Take care, and let us know how you do, okay? Best to you -- you've got game!
Yeah, my dad told me that Lyme was something that "people who are out in the woods a lot get," and when I told him that wasn't necessarily true, he rolled his eyes and told me to have fun spending all of my money going to see quack doctors, heh. He's of the opinion that I'm making everything up in my head, though, so it would be pretty impossible to convince him I had anything.
I hate that so many doctors view Lyme as a BS diagnosis because, if there are no LLMDs in my area, I would at least like to ask "regular" doctors to test me using the tests they do use, and I'm so over that "this one's a headcase" look doctors give me when I tell them about conditions I've been researching online. I've already gotten enough of that when I tried explaining to doctors that I was concerned about the possibility of a brain tumor or a seizure disorder.I don't appreciate being looked at like I'm crazy for trying to do what I can to get to the bottom of my issues since nobody else has any answers for me. What can you do, though?
I have heard of that documentary but haven't watched it. I'm a bit afraid to because I already have so much health anxiety and don't really want to know what other symptoms may be in store for me in the future. I'll consider it, though; thanks. :)
I'll do my best to update you all on my situation from time to time. :)
By the way, Dr Zhang offers phone consults at a reasonable price. Dr James Schaller does too but it's very expensive.
Don't give up, I have been told it does get better!
Don't give up, I have been told it does get better!
Forgot to say that I take Dr Zhang's Artemsia for babesia but along with antivirals. If you have Bartonella which is more of the neuro stuff I take Dr Zhang's HH2 for Bart's with an antibiotic. Dr Schaller recommends this protocol too.
I am so sorry to read of your illness and struggles. It is especially hard to read about people who were sick for such a big part of their childhood. Without access to a LLMD, I would recommend the Cowden protocol. From what I have read. If you just "wing it" with herbals, it is unlikely you will find significant improvement.
Looks like you are well covered here. I will just second the idea to watch "Under Our Skin." Do whatever it takes to get your Dad to watch it with you. I have read that you can see it free on Hulu.com.
On curcumin, I take it. It is known to reduce inflammation and is good for the brain. Cultures that consume a lot of it have substantially less Alzheimer's so it is believed to protect the brain somehow. It is not an antibiotic.
Artimisinin is a drug derived from a particular Artemesia plant, Artemesia annua. It is an anti-malarial but only kills most of the parasites, not all of them. Because of this, it is combined with other anti-parasitic drugs. It is sometimes used to treat Babesia, a cousin of malaria, that is a known coinfection of Lyme Disease. Several other varieties of Artemesia are used to make traditional medicines. You can google it to learn more about the specific Artemesia in your herbal concoction.
Have you been tested for Lyme at IGeneX yet? I highly recommend it. You need to find a doctor willing to authorize the tests, which could be the tricky part.
Check out the information on the ILADS website. Perhaps you can find some articles to show your dad to help convince him. If he is on your side, it will be easier on you to navigate your way through the mess that is Lyme disease.
Looks like you are well covered here. I will just second the idea to watch "Under Our Skin." Do whatever it takes to get your Dad to watch it with you. I have read that you can see it free on Hulu.com.
On curcumin, I take it. It is known to reduce inflammation and is good for the brain. Cultures that consume a lot of it have substantially less Alzheimer's so it is believed to protect the brain somehow. It is not an antibiotic.
Artimisinin is a drug derived from a particular Artemesia plant, Artemesia annua. It is an anti-malarial but only kills most of the parasites, not all of them. Because of this, it is combined with other anti-parasitic drugs. It is sometimes used to treat Babesia, a cousin of malaria, that is a known coinfection of Lyme Disease. Several other varieties of Artemesia are used to make traditional medicines. You can google it to learn more about the specific Artemesia in your herbal concoction.
Have you been tested for Lyme at IGeneX yet? I highly recommend it. You need to find a doctor willing to authorize the tests, which could be the tricky part.
Check out the information on the ILADS website. Perhaps you can find some articles to show your dad to help convince him. If he is on your side, it will be easier on you to navigate your way through the mess that is Lyme disease.
There's no convincing my dad; I can pretty much guarantee you all that. He's very mainstream in his medical views...went to med school for a while. He's also very convinced that there's nothing wrong with me at all; I could probably buy a mansion if I had $5 for every time he told me to quit faking. I tried talking to him last night and gave up. If I tried to get him to watch the film, he'd tell me it was propaganda and shut it off. I may ask the acupuncturist to talk to him about it since he said he was willing to talk to my dad over the phone about any questions he had, but he already accused the guy of being a quack, so...haha.
So yeah, my dad's not really one to focus on in all of this.
No, I've never been tested for Lyme. There are no LLMDs in Georgia according to ILADs either.
Honestly, I'm kind of to a point where I want to just stop seeking answers and force myself to quit thinking about my symptoms as much as is possible. Maybe if I completely ignore them and quit researching them all of the time, I won't notice them as much. I do appreciate all of the input, though. :)
So yeah, my dad's not really one to focus on in all of this.
No, I've never been tested for Lyme. There are no LLMDs in Georgia according to ILADs either.
Honestly, I'm kind of to a point where I want to just stop seeking answers and force myself to quit thinking about my symptoms as much as is possible. Maybe if I completely ignore them and quit researching them all of the time, I won't notice them as much. I do appreciate all of the input, though. :)
I am so sorry that your dad is so unsympathetic! :(
It is not uncommon for kids to be accused of faking Lyme symptoms when doctor' can't find anything in test results. It is awful, but even happens to adults sometimes, too. My own mother, a retired nurse, thought my symptoms were "due to normal aging" until I told her I had significant abdominal pain. A couple weeks later I was hospitalized. Then she finally believed there was something wrong with me. She lives a few hundred miles away, so she couldn't see me. Apparently, she didn't take my word for it that I wasn't!
If you can afford it, I encourage you to try the Cowden protocol. Many people have seen significant benefit from it. There is also talk on the MS forums that a gluten free diet helps noticeably with their neurological symptoms. Some go so far as the Paleo diet, which is even harder to do than GF, but the testimonials are significant. It won't cure Lyme, but it might help you feel better.
Is it worth asking a doctor for Lyme testing? There is also another test that might be helpful...a CD57. It is a particular immune cell that is only known (to ILADS doctors) to be suppressed by HIV and Lyme. If yours is low, it would show that something was wrong in your immune system.
I am so sorry I can't help, but you are welcome to come here to share your struggles, your symptoms, frustrations, etc.
It is not uncommon for kids to be accused of faking Lyme symptoms when doctor' can't find anything in test results. It is awful, but even happens to adults sometimes, too. My own mother, a retired nurse, thought my symptoms were "due to normal aging" until I told her I had significant abdominal pain. A couple weeks later I was hospitalized. Then she finally believed there was something wrong with me. She lives a few hundred miles away, so she couldn't see me. Apparently, she didn't take my word for it that I wasn't!
If you can afford it, I encourage you to try the Cowden protocol. Many people have seen significant benefit from it. There is also talk on the MS forums that a gluten free diet helps noticeably with their neurological symptoms. Some go so far as the Paleo diet, which is even harder to do than GF, but the testimonials are significant. It won't cure Lyme, but it might help you feel better.
Is it worth asking a doctor for Lyme testing? There is also another test that might be helpful...a CD57. It is a particular immune cell that is only known (to ILADS doctors) to be suppressed by HIV and Lyme. If yours is low, it would show that something was wrong in your immune system.
I am so sorry I can't help, but you are welcome to come here to share your struggles, your symptoms, frustrations, etc.
I saw your post above, and I thought I would give you this link, which was recently posted on the Lymedisease.org Facebook site. It is a story of a pediatric Infectious Disease doc telling other docs at a conference not to bother with blood testing a patient with a known tick bite and an erythema migrans rash, which in your case looked like a bulls eye or target.
Even to mainstream medicine, it is known that blood tests in the early weeks of Lyme are often false negative and should not be relied on for a diagnosis. Since so many doctors will follow the tests and not the rash just goes to show how substantial the misinformation is out there.
You could take this article back to your doctor and ask to be treated for Lyme. You will want to start treatment as soon as possible before it gets any worse. It gets much harder to cure after several months. While the standard month of antibiotics might not cure you, it will at least get you started while you look for an LLMD or a sympathetic doctor to treat you longer.
(Note: much of this article reflects the official IDSA position that after the first month, negative blood tests are always accurate, and in areas where Lyme is uncommon, positive blood tests are almost always false. LLMDS and many Lyme patients know from experience that neither is true.)
http://www.familypracticenews.com/news/child-adolescent-medicine/single-article/lyme-disease-avoiding-inappropriate-serologic-testing/147983309876c8e72ca1950ec2245c30.html
Even to mainstream medicine, it is known that blood tests in the early weeks of Lyme are often false negative and should not be relied on for a diagnosis. Since so many doctors will follow the tests and not the rash just goes to show how substantial the misinformation is out there.
You could take this article back to your doctor and ask to be treated for Lyme. You will want to start treatment as soon as possible before it gets any worse. It gets much harder to cure after several months. While the standard month of antibiotics might not cure you, it will at least get you started while you look for an LLMD or a sympathetic doctor to treat you longer.
(Note: much of this article reflects the official IDSA position that after the first month, negative blood tests are always accurate, and in areas where Lyme is uncommon, positive blood tests are almost always false. LLMDS and many Lyme patients know from experience that neither is true.)
http://www.familypracticenews.com/news/child-adolescent-medicine/single-article/lyme-disease-avoiding-inappropriate-serologic-testing/147983309876c8e72ca1950ec2245c30.html
Oh no worries about my dad. :) Frankly, he's done so much unforgivable stuff to me over the years that I couldn't really care less whether I had his support in this or not. The only reason I wish he'd believe me is so he could help me out financially with all of my doctor's visits and stuff, but I manage. He's not the only one who thinks I'm faking, though. Most people in my life do. I don't know how it's possible to fake some of the issues I have, but whatever.
I may look into the gluten free diet. I've heard of so many people having good results from it for a variety of issues.
I keep flip flopping on whether I want to continue with my herbalist or not. Last night, I was SO certain that I would wake up today, call him, and tell him that I was never coming to see him again because I know some of the formulas he plans to prescribe in the future contain aconite, which loads of sources say is toxic. Then today I woke up to an email from Dr. Zhang saying that some of the herbs in the formula I'm taking have anti-bacterial properties, and I probably experienced a Herx reaction when I started taking them, hence my worsening of symptoms. So now I'm back to not knowing what I'm going to do. I emailed him back and asked for his input on aconite.
I may look into the gluten free diet. I've heard of so many people having good results from it for a variety of issues.
I keep flip flopping on whether I want to continue with my herbalist or not. Last night, I was SO certain that I would wake up today, call him, and tell him that I was never coming to see him again because I know some of the formulas he plans to prescribe in the future contain aconite, which loads of sources say is toxic. Then today I woke up to an email from Dr. Zhang saying that some of the herbs in the formula I'm taking have anti-bacterial properties, and I probably experienced a Herx reaction when I started taking them, hence my worsening of symptoms. So now I'm back to not knowing what I'm going to do. I emailed him back and asked for his input on aconite.
Many of us were thought to be " crazy" or all in our heads, it wasn't until my blood tests went all wacko that the mainstream docs knew I was sick they just didn't believe in Lyme. The LLMD was the one who saved me from all that.
As for Dr Zhang, many of his products are great and I take them in combination with antibiotics. I just found too many people who were not cured by herbs alone. I was going to switch to all herbs but I researched it and decided against it but hey, you never know, we are all so different with this illness it may work for you.
I tell my fiancée it's all a crap shoot as there is not one answer to fix everyone.
As for Dr Zhang, many of his products are great and I take them in combination with antibiotics. I just found too many people who were not cured by herbs alone. I was going to switch to all herbs but I researched it and decided against it but hey, you never know, we are all so different with this illness it may work for you.
I tell my fiancée it's all a crap shoot as there is not one answer to fix everyone.
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