After having a high fever for 3 days followed by 3 more days of non-stop sleeping, my joints were attacked and I felt like I couldn't move. I couldn't even open my hands or walk down the stairs without a lot of pain. My doctor thought I might have Lyme and prescribed Doxycycline for 3 weeks. I have one pill left and I'm still exhausted and my joints *particularly my knees, feet, hands, wrists and shoulders) are still hurting. I feel better once I'm moving and have been doing low impact exercise on most days.
Is this normal? Does it take a while to get over this or could I have been mis-diagnosed? I am a healthy 48 year-old female.
Thank you in advance for your help. It is very much appreciated.
Ditto Jackie, Doxy needs to be prolonged and seeing an LLMD is the next step. They will guide you and test you with IgenX lab, the only good one for determining if you have lyme and possibly one of lymes co-infections.
That is terrific that your doctor thought of Lyme Disease and was willing to treat you right away. Unfortunately, the standard 3 weeks of Doxy treatment has an unknown failure rate. You might call your doctor back and tell him you still have ongoing symptoms and you have been hearing stories of people who ended up with much more serious cases of Lyme months after receiving the 3 week standard. Ask if he'd be willing to give you a refill for another 3 weeks. If not, find another doctor ASAP who will give you another round.
Thank you all for your comments. I went back to the doctor today and she prescribed another round of Doxy (just in case I have Lyme) and blood tests to rule out a variety of auto-immune diseases. The doctor is questioning that I have Lyme since the Doxy didn't get rid of my pain and fatigue. When the Lyme IgG IgM WB test and the other auto-immune tests comes back, we'll go from there. If I have Lyme, I hope to find a LLMD here in Philly.
Thank you again. Your comments and time are very much appreciated. Any other suggestions are more than welcome.
False negatives are common unless you use the IgenX lab.I tested positive for lupus and MS and almost died from the steroids. Please don't wait to see what your doc comes up with. See an LLMD and let them guide you that way you can avoid the horrors of being misdiagnosed and given wrong meds.
I am very passionate about it because a friend told me about someone else that did die yesterday from being misdiagnosed.
Its a pain, and its scary but it's your life...think about it.
Thanks for messaging back ... I hope you take what follows here as an attempt at being constructive ... but your doc does not sound like a Lyme specialist in the way I think of a Lyme specialist and therefore lacks the approach that I would require before concluding I don't have Lyme or its co-infections.
My reasons (and I am not medically trained, so for what it's worth), but I went through 20+ excellent MDs at major medical centers before one of them tested me for Lyme, only because she couldn't figure out what was wrong. The test came back positive, but she told me gently that I could not possibly have Lyme ... never mind the test ... because, as she said: "I have patients with Lyme, and they are all near death." And on that basis, despite the positive test, I could not possible have Lyme. Faulty reasoning, but mainstream medicine is full of nonsense like this.
-- The most likely reason you did not improve on doxy is that doxy is not effective against whatever you have ... such as a co-infection that the Lyme ticks often bring with them. These 'bonus' diseases (bartonella, babesiosis, ehrlichiosis, a few others) require separate testing and treatment from Lyme. That your doc apparently hasn't addressed that distinct possibility would trouble me greatly. And these co-infections occur in at least half of all Lyme-infected people.
-- That your doc is defaulting to test for auto-immune diseases without running through the possible non-Lyme tick-related infections (see above) also indicates to me (again, untrained as I am) that the doc is not familiar with Lyme+. Lyme is a bacterial infection, and if your doc treats you with steroids for a presumed auto-immune disease, your immune system will be suppressed and unable to fight off the bacterial infection that is Lyme. That has happened to a bunch of people who have posted here, and it puts them in much worse shape from which it takes a long time to recover. Your immune system needs to be up and fighting, not suppressed, in a bacterial infection like Lyme.
-- Beware reliance on the Western blot and ELISA tests (and these are NOT tests of auto-immunity, tho your post implies that they are). These tests were designed to pick up only Lyme (not co-infections), and the way the results are reported to docs like yours (who usually do not ask for all the 'bands' or indicators of infection shown on the test) leaves out bands that are specific, slamdunk indicators of Lyme. This is because the CDC (Centers for Disease Control) wanted to use these tests to monitor the spread of Lyme geographically (not for diagnostic purposes) and wanted the data pure, that is, data including only absolute Lyme infections, so they skip over some bands on the test that are significant in a diagnosis of Lyme. In addition, there was a Lyme vaccine created some years ago that failed, but it caused people who had the vaccine in tests to show positive for Lyme, and to avoid those false positives, those bands were eliminated from the test results most docs get. Bottom line: the 'standard' tests are not very accurate and are not supposed to be used for diagnostic purposes, only as indicators that a doc should take into account; however, most docs rely entirely on these faulty tests.
Okay, that's a lot of detailed data you probably don't need, but I'm not dissing your doc just for fun. There are other tests that Lyme specialists use that are more accurate than the W. blot and ELISA tests, but nonLyme specialists don't use them.
-- "If I have Lyme, I hope to find a LLMD here in Philly." The chances of a mainstream doc (like yours seems to be) coming up with a diagnosis of Lyme is not high, even if you have a screaming case of it. It's putting cart before the horse to base diagnosis of Lyme on the opinion of an MD who uses outdated measures of Lyme: your doc is already half way to telling you that you don't have Lyme, but you could indeed have it.
And your doc is apparently not looking for co-infections, the other diseases the Lyme ticks often carry.
Sorry to sound harsh, but in your situation, I would get copies of all the test results from the current doc and take them to a Lyme specialist for a second opinion. The risks of not do that are simply too high, given the misery that untreated Lyme disease produces. You don't need to tell your doc you are going for a second opinion, because the docs get really huffy sometimes, and you might need her in the future.
In your doc's defense, she is doing what she has been taught to do, and she means well. But not all docs are up to date on Lyme, and sadly your doc seems to be one of those.
Let us know how you do, okay? Again, apologies, but the sooner you get to a Lyme specialist the better for your chances of full and quick recovery.
I can't thank you enough for all of your thoughtful comments. I found a few LLMDs in my area and Jefferson University Hospital System (here in Philly) supposedly has a top-notch program specializing in Lyme. I will let you know what he/she/they say. Started my second round of Doxy yesterday.
I can't help but wonder if the joint and muscle pain I've been experiencing for the last few years is related. I tried acupuncture, myofascial release, massage therapy and structural integration (rolfing--which helped the most). I just thought I was getting older and that old injuries were taking their toll on me. But I've really struggled to the point where I can't lay on a hard mattress without a lot of pain.
So my question is this: could I have had Lyme in my system for a while causing these problems and then all of a sudden break into the fever, exhaustion and all over joint pain that I'm experiencing now?
Oh, yes, having a low-lying Lyme infection (maybe with co-infections) that is tolerable until another bite and a reinfection, and suddenly your immune system, that was handling things all right, is overwhelmed. Think of it like a small town cop who can handle the usual level of mild banditry, but when a new gang invades, suddenly the cop can't keep it all under control.
I think I had a low-level case of Lyme for several years with small symptoms that I just blew off -- like sore soles of the feet in the mornings. I mean, who would think THAT had any significance?? So I got show inserts, thinking my arches were falling, but didn't really help. Then we went back East in the summer, and I got REALLY sick, which turned out to be Lyme and babesia. I think it was a re-infection ... and now that I've been fully treated, and five years down the road, my now-five-years-older arches don't hurt at ALL!
The immune system is a marvelous thing, and it can handle a lot ... but has its limits. I'll never know if I had a previous Lyme infection before the big onset, but it's a pretty good guess. After a while, I gave up trying to figure it out, since the answer is truly unknowable. But take comfort that it's not in your head -- and whisper nice words to your immune system to keep up the good work!
Yes you can, it happened to me that way. I was bit 18 yrs ago that I know of then had all these pains, some said fibromyalgia, some said CFS, then wham 18 mos ago full force Lyme and bartonella. Glad you are going to an LLMD!
I can't thank you guys enough. You are making me feel "normal" and that I can beat this with continued persistence. If I truly have Lyme (which I think I do), it explains A LOT of how I've been feeling for a while.
One word of caution about university health systems and Lyme... Most of them adhere to the very strict IDSA definition, testing, and treatment. This works for a slice of the Lyme population. But if you don't fit in this narrow definition, they will say you don't have Lyme in spite of your symptoms and history. Or if you are still sick after a month of treatment, they will say it takes a year for the inflammation to subside, and then you'll feel better. And if you're still sick, or worse, even sicker, they'll say you have a mysterious immune disorder where your immune system is causing Lyme-like symptoms. They call it "post Lyme syndrome." Or, they'll say that you have some other, unidentified, incurable immune disorder that coincidentally occurred about the same time as your Lyme Disease and send you packing with symptom reducing meds.
They believe that coinfections along with Lyme are rare and not worth looking for, unless you show obvious symptoms of a coinfection after you have completed your month of Lyme treatment.
Many people who have had Lyme a long time end up at an LLMD, a Lyme Literate Medical Doctor who follows the ILADS protocols and treatment guidelines. These are brave doctors who have bucked the authorities to say that the narrow view of Lyme is missing too many cases, and that people can be treated and get better with long term antibiotics. The professional conflict is long and ugly.
Sometimes a supportive doctor appears, and we are so grateful for them. But I have also heard surprising, even shocking stories of doctors who become hostile, even rude when a patient asks about Lyme. If a University doc is willing to diagnose you, ask about treatment, and whether they will treat you until you are well, or only for a prescribed time.
MDs at university hospitals are subject to the same kind of go-along/get-along BS ... er, 'collegiality' that all other professors are: if you go against what the senior people say, you can kiss your career goodbye.
Those who wish to make a research career at a teaching hospital at a university may stifle themselves early on, just to keep their jobs, but once they get very senior, the desire and inclination to go against the Higher Ups has been bred and beaten out of them.
Thus results the situation Rico describes so well above. You may get lucky, but keep a watchful eye.
Ditto Jackie and Rico. Think of us as pioneers getting to the "free world" where the majority of doctors will recognize Lyme for the prevalent illness it is.
The latest thinking is if you have Lyme in the US, you have a co-infection.
If you have a chance watch the free video online of "under my skin" very eye opening per my chiropractor who just saw it at my suggestion as she is seeing more Lyme patients in her practice here in Fl.
If you do watch "Under Our Skin", don't be alarmed by it. The movie was made with the purpose of getting attention to the misery that is Lyme, and it shows some very ill people who look like they are at death's door.
***That does not happen to most of us.*** Do NOT think that you are headed that way.
Lyme irritates the brain and messes with hormones, so one's sense of well-being is already impaired biologically, and the mess the medical profession is in just piles on to make it worse.
I was pretty much well when I saw the movie, but if I had seen it earlier in my illness, it would have driven me to despair.
The movie is meant to scare people and get attention. The three people it focusses on in the movie all look like they are about to die, so here's the thing to remember:
I saw the movie at a preview/premiere at a small theater near where I live, and after the movie was over, about 8-10 people went up on stage to make some comments. It was not clear who most of those people were, but I figured out finally that it was the movie makers (director, producer, etc) and the rest of them WERE THE SICK PEOPLE SHOWN IN THE MOVIE -- only now they were all well and plump and healthy, with nice clothes and pretty haircuts.
THEY GOT WELL!!! But in the movie, they truly looked like they were about to die.
Scaring the pants off people who don't 'believe' in Lyme is one way to get attention, but it is important to treat gently those of us who are already scared pants-less.
So anyone who watches the movie, don't assume you are going to end up like them. Here endeth the lecture.
Jackie is right,
I was one of those sickest people so for me it gave me hope to see them well. I looked like I was dying and almost did but not everyone is like that. It's more of an eye opener and as Jackie said above. I am herxing today so I will zip my lips now.
Is there a section at the end of the version you saw that shows the people in reasonably good shape? I hope so ... that wasn't in the version I saw (it was pre-release), and maybe it was re-edited. If so, I am REALLY glad. And if so, I can stop ranting about the movie. :)
I highly recommnd buying the official copy of the DVD (online, directly from the producers) and watching all the extra features. They show follow ups on some people in the movies, as well as some patients they did not include in the movie.
My doctor called yesterday to let me know all of my tests came back negative:
Lyme IgG IgM WB
Lyme Antibody Total
CBC and Diff
Meaning I don't have any auto-immune diseases and, according to her, that I don't have Lyme.
I wake up in the night with excruciating pain in some of my joints--it's getting MUCH worse in my left knee, my hips and right shoulder.
It seems like every time I call one of the "referred" doctors, they either no longer work there or the number is no longer in service. I am hoping to make an appointment with someone by the end of today.
Any advice? I had tears streaming down my face this morning in frustration...if it's not Lyme, then what might it be?
Sorry to hear this, but it's a situation many of us have been through -- it took me 20+ docs to finally get a Lyme test, and tho it was positive, the doc said I wasn't sick enough to have Lyme.
So sometimes even a positive test won't get the doc's attention!
It's all very silly, that we have to (1) be sick AND (2) struggle with the docs, but it's just the way it is right now.
Just plow ahead with finding a doc who understands.
Until you have a doc who takes Lyme and the co-infections seriously, I would not worry about what it might be if it's not Lyme+. 'Don't borrow worry' as the saying goes.
Hang in there -- AND be sure to get hard copies of ALL those test results -- your post says the doc called you with the results. A future doc could look at those and see something entirely different, or be able to put those tests in context with future results. It's potentially useful data. A 3 ring binder is a useful thing, and ALWAYS keep your own set of results -- getting everything later from a doc's office is not easy, and you're never sure you get everything -- the clerks are lazy, in my experience, and they see no point in handing over test results that were negative, etc. --- but they don't have the conversation with you: they just don't copy the tests, and you'll never know what you didn't receive.
My position is that I paid for the tests, and I want copies of them. Now, not later. Be strong! We've all been there.
Sorry you didn't get any answers. In some ways this is okay, because you wouldn't have gotten appropriate treatment from these doctors anyway. And now you know it is unlikely you have Lupus or RA, so that is useful.
Ask the doctor who ordered the tests for the "bands" in the IgG and IgM Western Blot. Sometimes they have to call the lab up and ask, if the lab does not ususlly report them. Labs who use a mass produced test kit don't usually show the bands that aren't in the CDC surveillance criteria even though there are others that are significant. But at least you could see if you have ANY of the bands. I have been surprised at how many people say they turned out to have 2 or 3 or 4 Lyme specific bands, but were told they didn't have it because they didn't have the required 5 (which is just ludicrous).
It looks like you will need to get to an LLMD. If one of your docs will order the IgeneX tests, that could be helpful. But if they don't believe you have it, they might refuse.
Definitely get yourself to a LLMD as soon as you can! Check with local support groups...there are some docs within insurance groups who will order testing and possibly even treat it. Many ILADS docs operate outside the insurance networks, though.
Agree with Jackie and Rico. You need to find an LLMD, we have all been there, some sicker then others. I cried all day today too. Frustration is my middle name.
Sorry but go forward and fight (telling myself that too)
First of all, I'm sorry it's been so long since I've written an update. As you all know, it takes a long time to get an appointment with an LLMD and do all of the necessary tests.
My LLMD called to tell me that I tested POSITIVE for Lyme and 3 co-infections (Ehrlichia, Bartonella & Anaplasmosis). I have an appointment with her next week to determine my course of treatment.
I can't thank you all enough for taking the time to educate and guide me through this process. My primary care physician told me that I did NOT have Lyme and my low B 12 must be causing my joint pain. She said if my joints continued to hurt after 2 months, to go see a Rheumatologist. Doesn't this sound familiar? Unbelievable.
I am forever grateful to you...I will keep you posted. Molly :)
I am so glad you went to the LLMD! Thank you for coming back to tell us. I am sorry you have 4 infections, but just imagine how miserable you would be indefinitely, thanks to the doctor who doesn't understand Lyme and doesn't know a think about the coinfections!
I hope you start feeling better soon! Keep us posted!
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