I don't really know all the answers but there is another girl on here who I am sure can help you alot she knows A LOT about Lyme disease her name is JackieCalifornia I think I'm not sure if you can do a person search on here or not but she answers alot of the Lyme Disease questions and it would be good if you could find her on here
Your symptoms 'sound' like lyme disease - anxiety itself being a symptom - anxiety can cause muscle stiffness etc; - your symptoms are very much like mine - I tried all kinds of 'therapies' - chiropractor, massage, accupunture, etc. - I eventually got treatment from an LLMD. - who diagnosed me on symptoms only - never had a positive lyme test.
I was told I have 'fibromyalgia' and my symptoms did fit with that BUT it all started following a 'tick-bite'!!
You are doing the right thing in finding an LLMD. most mainstream doctors don't have much knowledge on the subject of lyme disease and co-infections.
Do you remember a rash or anything before all this started - many people never see a tick or a rash.
Lyme disease can cause constant joint/muscle problems - also some people notice a 'flare -up' of symptoms every 3 to 4 weeks - also when their 'monthly' is due.
that's the thing about Lyme. it can look like a lot of things.
Here is a magazine (TV) segment from a Boston channel that aired in NOvember 2008. It featured a couple patients, one a teenager who wound up in a locked psych ward because lyme disease hadn't been diagnosed yet.
anxiety, obsessive thoughts, joint pain muscle pain, what I call "internal vibration"....you hit many nails on the head. so is lyme a possibility for you: yes.
Is there a test that can rule it out? no.
my sister had a positive test years ago, when she went untreated for a time, her symptoms got progressively worse to the point of being disabled. She was re-tested at that point, and like you, only came up positive on band 41. Regardless, the LLMD put her on IV antibiotics and my sister turned a corner.
Try to find a LLMD in your area. you are about a 4-hour drive for one of the foremost Lyme Mds in the country (he's in DC) but insurance would not cover his visits.
I would suggest reaching out to the "Hampton Roads Lyme Support" group to find a LLMD to evaluate you to rule lyme in or out in your case. You can google and search for their contact information. There is also a support group in Richmond. They should be a better resource for Lyme-literate doctors in your area.
Best of luck to you.
Thank you for all of your help everyone. That does sound very much like my situation with only band 41 coming up positive but my antibody test coming up "high" and my western blot came up negative. All of my doctors say I do not have Lyme. I do not recall a tick bite nor a rash, but have found 2 ticks crawing on my head that I just picked off and put in the toilet. I am going to try my hardest to find an LLMD in my area. All of my doctors say it is anxiety and depression, which I know I have both, but I now know that both can be a symptom of Lyme disease. So basically, most of you who have commented think I probably have Lyme Disease and that there is no possibility this can all be caused by anxiety? Just to make sure I am going to try and find an LLMD around my area, all though I was told my insurance will not cover it and I have no money to pay out of pocket for it. But I am going to try and find an LLMD in hopes of finding out what is causing my symptoms, or to rule it out. But none of you think this can just be caused by anxiety alone? Thank you everyone for all of your help. I will keep you posted.
Hi -- I don't think anyone here is medically trained, so we really can't say whether you have Lyme or not. That said, most of us have been through the mill getting diagnosed and treated, so we try to pay attention when we hear from someone with symptoms like we had. That's where we're coming from.
As to Lyme versus anxiety, it is of course possible that you don't have Lyme and are anxious for other reasons, but given that it is not (from what I read) uncommon for Lyme patients to have anxiety. However, it would be prudent imo to check with an LLMD to 'rule out' or determine that you don't have Lyme. Lyme doesn't just go away by itself, and it can cause more problems as time goes on. Therefore checking with an expert (an LLMD) is what I would do in your situation.
It's not uncommon for LLMDs not to take insurance, but you might be able to pay the LLMD and then get some money back from your insurance company by filing directly with them instead of relying on the MD to do so. In any event, it's your health we're talking about, so what could be more important to spend some money on ?
Best wishes! Let us know how you do and what you hear and learn --
I took your adivce and wrote the Lyme Support in my area to maybe try and find an LLMD near me. this is what I wrote. It might help you to understand my symptoms. it is a more in-depth look at my symptoms. Please any more comments would be greatly appreciated....
To make a long story short, for almost a year now my life took a bad turn and I have been having horrible symptoms. I have had various test, many blood test; cbc, thyroid test, complete metabolic panel, many std tests, ANA test, EKG, 24 hour holitor monitor test, EEG, an MRI of my brain and an MRI of my c-spine. All of these test came up negative. I was also tested for Lymes Disease on two differect occasions, the first time my lyme disease IgG/IgM Ab test came up "high" with a 1.09 on a 0.00-0.90 reference interval. Then they automatically did a western blot test and and the IgG P41 Ab band came up positive and my IgM P41 Ab band came up positive. so bands 41 came up positive but that way the only band that did, so thy told me my Lyme Disease test was negative, and that I did not have Lyme Disease. Then I had another Lyme panel ran and it was a 0.98 liv with a reference interval of 0.00-1.20 so it was a negative test. So basically all of the health test that I ha had have came up negative, and I was diagnosed with anxiety. I went to various doctors and the last doctor I saw was my primary care physician and he gave me lexapro. I have been on it for a moth now and it does not seem to be working. I have had horrible panic attacks in the past year I have also had many symptoms; I have suffered from horrible headaches in the sinus areas and in the jaw, I have had bad indigestion and upset stomach, nausea, heart palpatations, difficulty breathing, skin hot to the touch, creepy crawly sensations on my face, head and scalp, flushing with red itchy skin, horrible muscle pain, horrible treamors,internally vibrating while falling asleep and waking up, extremely stiff and weak muscles, red, blood shot and itchy dry eyes, I also have blurred vision and doubled vision, like I can constantly see my nose in my vision and whenever I am focusing on a object whatever object is near or behind it is doubled, I also feel like I'm drunk or drugged before I go to sleep, insomnia at night, and sleeping all day. My worst symptoms are very high anxiety and depression, extreme fatigue during the day, doubled and blurred vision, very hard time concentrating, very poor short term memory, depersonalization (feeling like I am in a dream-like state and outside of my body, like I have been drugged and cannot come down), obsessive thoughts, I have very fatigued and tense muscles, and I have popping, cracking and grinding sounds coming from almost all of my joints, like when I get up from sitting for a long period of time all of my joints crack, my worse joints are my neck which, which seems to crack everytime I move, my shoulders which crack are make gridning noises everytime I move, my spine, and my whole back from the top to bottom, and my knees and hips crack and hurt sometimes. I am a member of MedHelp.org, and as I have been posting on there, if you want to look up my post on Medhelp.org my nickname is "Soanxious89". I have posted in both the Anxiety and Lyme Disease forums and in the Anxiety forum, those suffering from anxiety say that they have experienced my symptoms except the joint popping and grinding and in the Lyme Disease forum they say that they have experience almost all of my symptoms and anxiety is also a symptom of Lyme Disease. They also say that the blood test usually used by MD's sometimes inacurate and that I could still have it with my negative test results, especially because my symptoms sound so much like Lyme Disease. So one MEDHelp.org forum posted told me to contact you guys and so I found this site and you were the person who it said to contact with any questions or information. So now I am here, reaching out to you because you guys are my only hope in finding a LLMD. I really want to find an LLMD and get him to test me again for Lyme Disease,and if I do have it I can be cured, and if I do not I can maybe take the doctors advice seriously and blame it only on my so called "anxiety". But I really need your help. Does it sound like I have Lyme Disease? And can you please help me find an LLMD in my area? Please write me back at your earliest convenience
Let me tell you this,
Your symptoms do sound like lyme disease. In fact, I have all the above symptoms you listed. When I asked doctors about the joints popping, cracking, they would tell me everybody has that, but I knew it wasn't normal.
I am glad that you are looking things up and trying to figure it out. That's how I caught myself. I keep researching because simply anxiety diagnoses made no sense to me. Trust your gut, and do what you got to do.
I tested negative also the couple few times because they were running a test on me that should be off the market. They are very inaccurate. Get the proper testing through a LLMD.
This does not sound like anxiety alone to me. You're post sounds like something I exactly wrote earlier this year. I mean literarily asking the same questions. No one can save you, but yourself. Sometimes you have to be your own doctor.
I had to go against what ten doctors and against my family. They all told me it was anxiety. I didn't blame them, if doctors kept telling my parents over and over again that's anxiety, of course, they were going to believe them.
Please get an educated doctor, so you can go on the right path and get treated.
It may not be lyme, but based on having high antibodies at first, and testing positive for band 41 (which is the flagellum of the lyme spirochete), and your symptoms; you should definitely keep lyme into consideration.
If you have any questions, please send me an message.
I know how it feels to try and get diagnoses.
Two months ago, I didn't have a diagnoses, now I know what's wrong.
I know that you will know what is wrong too, just keep a positive attitude.
For now work on dietary changes, if you need help with that message me.
thank you for your post. I've been having to put up a fight with my doctors and family and friends too, they all say it is anxiety, and I am not convinced. So you have all of my symptoms? I also did not mention that I sometimes have muscle twitches and, balance problems, full ears that pop and ring, and I also have other symptoms that I forgot to mention. Obviously regular doctors are not very familiar with Lyme Disease because if they were with all of the blood test I have they would know if I had it. I have had many other health test and they just cannot seem to find anything wrong with me. So I sound almost identical to you? My worst symptoms are the horrible fatigue and exhaustion, depersonalization (feeling like I am in a constant dream) and the joint popping and cracking everytime I move. So which joints of yours cracked all of the time when you had lyme disease? nand did you have depersonalization? Do you still have Lyme and if so are you being treated for it and is it working? Did your LLMD say Lymes disease was curable? Your feeedback would be greatly appreciated. Thank you.
I agree with the above posts. The fact that your symptoms are so broad, affecting different parts/systems of the body, is consistent with Lyme. And yes, it can be a huge uphill battle to find the right doc and get into the right treatment. But, the good news is that it is treatable.
The length of treatment, and how smooth (or rough!) it is, varies so much from person to person. Big factors can be how long you went undiagnosed, whether or not you were treated (incorrectly) with steroids, and your general health before all of this began for you.
I was fairly young (~27) when I became obviously sick, though I don't know for sure how long I had it. It took me about 1.5 years before I ended up in the office of an LLMD. During that time, I was given oral steroids which were detrimental to my situation. I've been treating for close to 2 years (will be 2 years in December). I am still dealing with it, but have recovered much in my life, including the ability to work full time. I still have set backs, but they are less frequent, less severe, and last for less time. I am hopeful for a full (or near so) recovery.
wonko- Thank you for your post. I am happy to hear about your rode to recovery. I have not taken any steroids, but was on 100mg of doxycycline for about 2 months for another unrelated skin issue, during June and July of this year. and I know it is sometimes used to treat lymes disease, but it did not have any effect on my symptoms whatsoever, it did not make my symptoms better or worse. I know that I have servere anxiety, which I have been diagnosed with, and all of my health test came up clean, so the only other possibility that could be causing my symptoms is lyme disease. I am currently trying to find an LLMD to visit to see if he feels that I may have lyme disease, but if I do not, do you think it is a possibility that it is all anxiety that is causing my symptoms? were/are your symptoms similar to mine? What were/are your symptoms? I have been feeling like this for about 1 year, if I find an LLMD and he thinks I have lyme disease and treats me do you think my lymes disease can be cured? Any feedback would be greatly appreciated. Thank you.
The lack of effect of doxy on your symptoms is not consistent with Lyme disease. Often times people with Lyme disease, especially when it is diagnosed late (long after the initial infection), treatment causes an adverse reaction, often referred to as a "Herx" (short for Herxheimer reaction). That doesn't mean you can't have Lyme, I would still suggest that you find a good doctor to evaluate you. No one online can diagnose you, obviously, so finding a doctor who you trust is key. It is also the case that many ticks infected with Lyme also carry co-infections, which can respond to different antibiotics. So really an expert on tick-borne illness is needed to evaluate your situation. Do be sure to tell the LLMD about your experience on antibiotics, it is likely a useful data point for them to know.
Some people become sick very suddenly from Lyme, while for others, it is a slow process. I was in the later, my illness was insidious to the point that I didn't even really know I was sick until it got "bad." Each problem by itself seemed minor, and at first my health problems would come and go, causing me to dismiss any concern. But over time, it all accumulated and I eventually went down a more sharp downhill road.
It would be exhausting to list all of my symptoms. My Lyme disease had spread, or become systemic, before it was caught. I had many neurological symptoms, to the extent that I had visible damage on my brain MRI. My ears hurt and rang, there was drilling pain behind my eyes, I experienced double vision, blurriness, floaters, and the appearance of flashing lights and optical migraines. My face would sometimes turn bright red, much like the butterfly rash often associated with lupus. I had bilateral joint pain throughout most of my body. I developed a heart murmor/palpitations. I was extremely fatigued, and I had cognitive problems. My SED rate (an inflammation marker) was consistently high, but overall almost all of my medical tests were normal. Before I turned 30, I lost the ability to work full time. It was a devastation to my life!
OK, enough of the flashbacks. Focus on the positive: I'm much better now.
Even in late-stage cases, there is a possibility for improvement with treatment from Lyme disease and other tick-borne infection. Considering the morbidity of the disease, any chance for improvement is a very, very good thing. I don't know if I'll ever be "cured," but I have much of my life back and consider myself fortunate, given from where I came.
Yes, I do get all the above symptoms.
Not so much with the obsessive things, but I have my moments too.
I also get anger rages. Where I totally start yelling at everyone if I hear any noise.
Your whole story sounds like mine. I started with a VERY high heart rate, and then felt lightheaded for a long time. I was always dizzy. I have to say my dizziness is not as bad as it was, but I do get a lot of joint/muscle pains now. I will give a list of my symptoms (I am sure these are not all of them).
* muscle twitching (I get that one often)
*Stomach pains/acid refulx
*muscle joint pains
*sensation of something crawling under my skin
*shortness of breath
*feels lime everything around me is not real
* mood swings
*hot flashes/ chills
* eye pain
*ringing in ears/ ear pain
Also my joints don't hurt when they crack, but sometimes my knees do hurt.
My neck cracks a lot, shoulders, hips, knees, back, jaw, elbows, arms...
Was first diagnosed with panic attacks.
I kept researching till I found out it's lyme disease.
And when you get diagnosed with lyme disease, you will go through this stage of doubting it. It's just weird, at least I did.
Anyway, I am not on antibiotics yet. My diagnoses was confirmed recently, and I am on this protocol to remove the toxins before I start antibiotics.
I do feel better. Better than what I felt a year ago.
I think being on gluten free, sugar free, and soy free diet have helped me.
Please, if you have any questions don't hesitate to ask me.
I know exactly how you feel. It was so hard convincing everybody it was lyme disease.
It was harder convincing my family than it was convincing doctors.
They still don't completely understand, but trust me it's a lot better now.
Try your best not to stress, I know it's very hard.
But stress weakness your immune system even more, and that alone, causes more symptoms.
I hanged out with my friends as much as possible when I was going through all this (getting a diagnoses) because I didn't want to go all crazy, and I just wanted to get my mind off my symptoms.
My LLMD said that there is a chance for me to be cured, but it will take a while.
Good luck to you.
Thank you for the your post. Yes I did not react at all to the doxycycline. I had an MRI and an EEG and it all came up normal, does that count for anything? Also, how long did you have lymes disease before you were diagnosed? Did you symptoms come and go? Like my heart palpitations and many other of my symptoms went away, but I still have really bad joint popping and stiffness, extreme exhaustion, and really bad depersonalization. But alot of my other symptoms have went away, and they sneak back here and there. Is that consistent with Lyme disease? What blood test did they give you that confirmed that you have Lyme disease? The closest LLMD to me is in Maryland 4-5 hours away, and I was told that LLMD's do not take insurance? My husband is in the military but I still do not think that LLMD's do not take insurance. Do they? Please write me back as soon as possible. Thank you.
Thank you so much for your comment. I do have many questions and I do definitely need you advice and help with this whole Lyme disease issue. My problems started with panic attacks, then it all went downhill from there. I have had so many health test and was diagnosed with anxiety. I started taking lexapro and it really didn't make a difference. But some of my symptoms have gone away, except for the joint popping, muscle tension, extreme exhaustion, and depersonalization. But is the fact that my symptoms come and go consistent with Lyme disease? And do my symptoms sound like yours? Also, what blood test did you get that confirmed that you had anxiety? I am currently looking for an LLMD, but the closest one is 4-5 hours away in Maryland. I also am concerned that LLMD's do not take insurance, I was told that, my husband is in the military, but I still do not know of they take insurance, and if not, about how much does it cost to be treated? Also your doctor said you will be cured of your lymes disease? How long did you have lymes disease before you were dianosed? How long did you experience symptoms before you were diagnosed? Please help me, I just want to feel and be healthy again. Please get back to me as soon as possible and thank you for your help.
My symptoms do come and go.
Sometimes I have no symptoms at all, and sometimes I have real bad ones.
Sometimes I just have one symptoms, and others too many. One hour I have joint pain, the other can be symptom free. It's very random.
I had the same problem. I go to college full time, and got no money to pay out of my pocket. Honestly, LLMD's don't work under insurance companies. Some do take insurance, but it depends how much your insurance company covers. What type of insurance do you have, and what state do you live in? I know, it's very hard for me to pay the medical bills and school. That does not include the fact that I am jobless.
Anyhow, your story sounds a lot like mine, as I have mentioned.
There is NO test to confirm anxiety. I think your anxiety is just a symptom. Anxiety does not cause joint pain, maybe it does in some cases, but usually there is an underline cause. Doctors after a while diagnose people with anxiety when they run out of options. All your test came out normal, which makes them think that there is nothing wrong with you, and it must be anxiety.
I am not medically trained, and nor can I diagnose you. I am just saying make sure it's not lyme disease, as your symptoms sound like it, but then again, lyme sounds like a lot of other disease, but it can be a very big possibility.
I had lyme disease for one year, and was diagnosed about two months ago. I actually suspected lyme disease two months after I got sick. I should of not waited this long to get an LLMD.
You mentioned above that you were on antibiotics, and they did not help.
They will take a while to have an effect on you. In fact, you might even need to get on IV antibiotics if oral ones do not work. Plus, your symptoms should increase when you get on antibiotics before you start feeling better.
I got checked for everything under the sun.
MRIs/CT scans/ ecocardiogrm/ blood work...
Everything came back normal. I know how frustrating it must be for you.
Let me know if you have any more questions. I will try to check on here as soon as I can.
That you for your post. My symptoms come and go just like yours, and they sound alot like yours. my joints are popping really bad right now, almost everytime I move, I feel like im high on some kind of drug, and im so tired and so irritated i dont even know what to do with myself. Yes I had many test too and they didn't find anything. They just diagnosed me with anxiety. All of my friends and family think I'm crazy and over reacting and that I just have anxiety, but I know my body, and think there's something else wrong with me. I too thought that when I first got sick that I had lymes disease, but when I had my blood test done by my regular MD, my ELISA came up positive and "high" but my western blot only showed band 41 to be positive, so they said I didn't have Lyme, and I trusted them, and after the rest of the health test, I just assumed it was anxiety too, but in the back of my head, I knew, and still know that there is something else wrong with me. I have been sick for almost a year too, just like you. It's pretty crazy how our stories are so similar. So you have had to come out of your pocket for you LLMD? About how much, if you don't mind me asking, does it cost to see an LLMD and be treated? My husband is in the military, so I have pretty good insurance, and I am currently living in Virginia, but I cannot find an LLMD any closer than Maryland. So if your doctor told you you can be cured, hopefully I can too. Have you started antibiotics yet? Have you started to feel any better? What blood test did your LLMD give you that confirmed and showed you have Lymes disease? How long did your LLMD tell you it would take to feel better, and
for you to be cured? If i go see an LLMD within
the next month and I have been sick for almost a year, do you think that I can still be cured for
good? I am so scared, I just do not know what to do with myself anymore, I feel like I am loosing
myself. I feel horrible everyday and I am loosing
hope fast. I just want my life back. Please write me back as soon as possible. Your help is greatly appreciated. Thank you so much.
Yes, you have a great chance of being cured.
I knew someone who had it for four years, and now they are completely cured.
Don't worry. Trust me, one year is not that long. Some people take years and years to get diagnosed, and by then it's too late. Let me tell you why your ELISA was high and just one band reacted on westernblot. I am guessing you get tested for lyme soon after you got sick? That's usually when the ELISA is accurate. To be honest, that test should be off the market. It *****. If you get your westernblot done (though a good lab), I am sure more than one band will react. I did the westernblot through Igenex lab, and that's where you should get yours done.
I am not going to lie to you. But for tests I have to pay 3 thousand dollars, and I only been going to my LLMD for few months. The tests cost a lot, and if you got no insurance than it's horrible. I don't know how much my insurance is paying out of that. There are some people who got insurance that cover almost everything, and maybe that's how it is for your case. You just got to check.
I have to be on antibiotics for probably eight months, maybe more... it depends if I will still have symptoms or not, but honestly I think I am going to be under treatment for more than one year, if not longer. Who knows, I really cannot predict.
As I have said before, I do feel better. I am on A LOT of supplements and on a strict diet, and that have been helping great deal.
Don't be scared, everything will be okay. You will be cured, and you will find out what's wrong exactly.
I want my life back too. Really bad. I want to be able to run and dance again. To not be scared that my symptoms are going to flare up in the middle of lecture. For my memory to be good once more. I want it back bad, and I will get it back. So will you.
If I may make a couple of comments on the post above --
"Some people take years and years to get diagnosed, and by then it's too late."
It's never too late. The longer one is infected, the longer it probably takes to cure, but to not even try to treat is not warranted for any reason I know of. There is some controversy over whether everyone is fully cured -- and some certainly seem to be -- but even if not fully cured, it is very possible to improve the quality of life to the point that it is very very close to being cured. It's never too late.
"[F]or tests I have to pay 3 thousand dollars, and I only been going to my LLMD for few months."
My test were not that expensive, and I was paying out of pocket (i.e., not through insurance). Most insurance will cover at least some of the cost. Don't let the cost stop you from calling and at least trying to get diagnosed and, if positive, treated.
Lyme does a tap dance on the patient's head like nothing I've ever heard of ... and it's very easy to get discouraged. When I get down in a funk like that, I go DO something like take a walk or call a friend or whatever, just to get my mind off it ... and I feel better after that. You'll develop your own coping mechanisms too -- we all do.
Take care -- and don't give up!
When I said too late, I meant people have damage that is completely irreversible.
So, better to get treated early before things like that occur, and that makes treatment that much more complicated.
On the other hand, my tests were that much expensive, and they will be much more when I do the co infection test, xmrv, hormones, liver, inflammation, etc. Tests are not cheap.
I guess it can be different for everyone, depending on how much tests you got done and through what lab.
Lymiegirlee and JackieCalifornia,
Thank you so much for your posts. I showed my mom (the person who said I had Lyme disease the whole time) everything all of you guys have written and she was was actually very supportive and told me to go see a Lyme doctor. I do hope that my insurance will cover most of everything once I start going to a Lyme doctor. Do you think there is a possibility it will? And even if it doesn't, my health is what I should be worried about rather than how much money I'm spending. I do have a couple questions, on the first visit to my LLMD will they be able to tell me if I have Lyme disease? And will they run tests so I can know DEFINITELY if I have Lyme Disease or not? I want to be able to leave my first visit with my LLMD and know whether or not I have Lyme disease. Do you think that will be possible? I will be scheduling an appointment later this week to get in as soon as possible. Anyways, so the both of you do think that I can be cured of lymes disease if I receive treatment soon? Please wrote me back as soon as you can. And thanks again so much for your posts, I can honestly say sometimes it's the only thing that gives me hope in feeling better. Thanks again.
Your mom sounds to be very wise! You are lucky to have her in your corner.
Based on symptoms, the LLMD might (perhaps) be able to make a tenative diagnosis. However, s/he will probably run some blood tests, will take your history of symptoms and where you might have been exposed to ticks, and then ask you to come back in a couple of weeks when the test results are back. This is just based on my own experience. Every doc is different, and so is every patient and every disease presentation.
When the tests come back, they may show a strong indication of infection, which makes the diagnosis easier. However, the tests are not perfect, and they must be read in conjunction with your symptoms and history. That's where the 'art' of medicine is important, and thus your MD's skill and experience.
I do believe that Lyme can be cured -- and in others, Lyme can be driven down to such a low level it's a functional cure. Also, one of the symptoms of Lyme is anxiety -- that nervousness and worry that just won't shut up, nagging at your brain about everything. Many if not most or all of us posting here have had anxiety, about both daily life and about Lyme. That too begins to recede when treatment takes hold. Eat well, sleep well, take your vitamins and your meds, and you'll be amazed what can happen.
Best wishes --
Thank you so much for your post. I am currently looking into two LLMD's in Maryland, which is pretty far away but they are supposedly the closest LLMD's to me. I hope I can get in soon and be seen, I really hope they can tell me during the first visit if they think I have Lyme Disease, I really hope so because I do not want to have to drive four to five hours that frequently. I do have 1 very important question...is an "infectious disease doctor" the same thing as an LLMD? Or does an infectious disease doctor use the same type of test and treatment as an LLMD? And do they know alot about Lyme disease? Basically what I'm asking is can I go to an infectious disease doctor and get the same outcome as going to an LLMD? Can an infectious disease doctor diagnose me and treat me for Lyme disease? I was told there might be a good infectious disease doctor in my area. Please write me back as soon as you can. Thank you so much.
That's a good question you are asking. The answer is not straightforward, unfortunately. There's a reason:
A couple of decades ago, when docs were first figuring out there was a new disease spreading in the northeast (like Connecticut), the first docs involved were two kinds: infectious disease (ID) docs; and rheumatologists, who treat arthritis and swollen joints -- one of the obvious symptoms of the new mysterious disease were swollen knees.
Over the years, these groups of docs (many of them belonging to an MD organization called Infectious Disease Society of America, or IDSA) did studies and wrote papers and came to some conclusions and recommendations for what was named Lyme disease after the Conn. town where it was first identified.
Unfortunately, those same docs who were the 'discoverers' of Lyme got stuck on some specific ideas of how to treat Lyme, and they staked their reputations on the basic ideas that Lyme was hard to get and easy to cure with a couple weeks of antibiotics.
Over time, however, other docs began to notice that Lyme patients were sometimes still sick after a short course treatment was done, and began to question the IDSA position on a couple weeks of antibiotics being sufficient. The IDSA and the original Lyme docs refused to budge and continue to this day to insist that they are right about Lyme: anyone who still has Lyme symptoms after a short course of antibiotics isn't really sick, they have just developed (according to the IDSA-types) an auto-immune reaction, in which their immune systems continue to react as though the patient still has Lyme, but really doesn't.
Over the years while the IDSA and the original Lyme docs were busy sticking to their original ideas and treatment approaches, other docs were taking a more open-minded approach to what Lyme might be and how it might be treated, because they saw a lot of people still suffering after the IDSA-approved couple of weeks of antibiotics. Those open-minded docs were often not IDSA members, and were not even infectious disease docs: they were simply docs who saw suffering that was not relieved by the IDSA-approved treatment, and they tried to figure out the puzzle that is Lyme.
Those open-minded docs were of all kinds: internists, GPs, endocrinologists, pediatricians, and other specialists. Because the IDSA has 'infectious diseases' staked out as their territory, and the truly Lyme-savvy docs come from all areas of medicine, the nickname of 'Lyme-Literate MD' sprang up and has stuck as shorthand for a doc who takes Lyme seriously in a way that the IDSA apparently does not. There is no degree or certificate making someone an LLMD, and many if not most of them don't call themselves LLMDs ... Some LLMDs are indeed infectious disease docs, but overall I would guess from what I read and what I hear that an ID doc is not likely to think like an LLMD would -- but that is no hard-and-fast rule.
This is a really long way of saying: the ID doc you are thinking about seeing may practice like an LLMD, but there is no way to find that out without seeing him/her. Asking any MD if they are an LLMD is likely to get a strange look and no answer in return, since it's just a nickname without official meaning.
The LLMD-types, regardless of what they do or don't call themselves, often belong to another organization called ILADS, short for International Lyme and Associated Disease Society (website at ILADS [dot] org).
In some states, MDs are protected by state laws allowing to practice medicine according to their own conscience and what they believe to be right for their patients, even if that treatment goes again conventional wisdom like the IDSA has set up as the 'correct' way to diagnose and treat Lyme.
In other states, the laws do not give an MD the right of conscience, and if they don't hold to the standards set up by organizations like the IDSA, their licenses to practice medicine can be terminated. I understand there are some areas in which LLMDs have lost the ability to practice medicine and in effect been run out of the state. For that reason alone, many docs who lean toward the ILADS approach will not say so publicly and that is why we don't post LLMD's names in public here, because of the risk that they will be harrassed by local/state medical boards who line up with the IDSA 'hard to get, easy to cure' approach.
Now to answer your specific questions:
--Is an ID doc the same as an LLMD?
Maybe; but maybe not, and perhaps not likely. The only way to find out is to go for an appointment and see what reaction they have to your symptoms and history.
--Does an ID doc use the same tests and treatment as an LLMD?
Maybe, but again, perhaps not likely. Depends on the individual doc and how 'enlightened' he/she is.
--Does an ID doc know a lot about Lyme?
Maybe, but they may THINK they know a lot about Lyme, but really don't, if they follow the IDSA standards of diagnosis and treatment.
--Can you get the same outcome by going to an ID doc instead of an LLMD?
Maybe, but not likely.
That said, if the ID doc is easy to get to and is on your insurance, for example, then going to see him/her can't hurt, except in that generally speaking, the longer you wait for diagnosis and treatment, the more persistent the disease can be, but I personally think that after the first couple of weeks or months of infection, a little extra time probably doesn't make a big difference in the effectiveness of treatment. I am NOT medically trained, however, so please don't rely on me to in making your medical decisions. I personally went to a lot of docs before getting diagnosed with Lyme and a coinfection, and finally found an LLMD who did test and diagnose me properly.
So, the short answer is: Can an ID doc do what an LLMD does? Maybe, but you have to check the doc out by what tests s/he runs and what answers and attitude you get back. If you walk in and ask the doc if s/he is an LLMD, you likely won't get a straight answer, and the doc (if s/he is NOT an LLMD) may be very suspicious and not very friendly. I have had an ID doc, when I told him I had been treated for Lyme, not want anything to do with me, even tho I had gotten another tick bite and was quite ill. All the doc wanted was to get me out of his office.
All this puts the patients in a terrible spot, but it's where medicine is today, unfortunately. You might get lucky, tho, and in your situation I might go see the ID doc and hope for the best. Getting treated sooner rather than later is a good thing, since Lyme can burrow in and be harder to cure later, and even ID docs believe in treating Lyme, only not for very long. You might end up having to go find an LLMD too, but you gotta start somewhere.
Sorry for the long story and not very helpful commentary -- wish there were a clearer answer for all of us! Let us know what you decide to do and how it goes, ok?
Thank you so much for your post. So I guess do you think the best thing to do is to go and try and infectious disease doctor to see if they can properly diagnose and treat me for Lyme disease, and if they cannot, then call an LLMD? I am close to the infectious disease doctors, but the closest LLMD to me is in Maryland 4 hours away, and both LLMD's I have came in contact with both said they do not take any type of insurance. They said I can make a claim to my insurance company, but they do not take it. May I ask how did you pay your LLMD? Out of pocket or did you make a claim to your insurance and they actually paid for it? I just do not know what to do because I already have outstanding doctor bills and I do not have enough money to pay in full for the LLMD visits, much less the medicine and treatment. Also I have another question, if I go to an LLMD, can they run tests and be able to tell me if I DO NOT have it? What I mean is, can they DEFINITELY tell me if I do or even if I DON'T have Lyme disease by blood tests? Sorry if I'm being confusing but I hope you understand what Im trying to say. I feel so horrible, there is no way this can just be anxiety. As of lately I have a server headache in my temples and behind my eyes, my jaw hurts so bad and pops constantly, my joints constantly crack and pop, especially my back, shoulders grind everytime I move my arms, and so does my neck. It also hurts to lift my Arms all the way and my arms are really weak and so are my legs, I have bad depersonalization and brain fog, I am very angry and frustrated and I've been serverely depressed. I'm getting desperate and do not know what to do. I feel horrible everyday and just want my life back.