Is this normal?

[Mnap]

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.

M

[Mnap]

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?  

Thanks again in advance...

[JackieCalifornia]

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.

[mojogal]

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.

[Mnap]

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.

[Ricobord]

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.

[JackieCalifornia]

... and doxy might not be the best medication.  It's the golden oldie, and sometimes is appropriate, but not always.  I'd see a Lyme doc *soon.*