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

[mojogal]

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.

[JackieCalifornia]

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.

[mojogal]

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.

[JackieCalifornia]

I agree fully with Rico's comments above.

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.

[Ricobord]

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.

Keep us posted!

[mojogal]

As a very smart person on here told me, we are doing a public service, trying to help people avoid what many of us have been through. Misdiagnosis and agony.