New and still being tested for everything under the sun...

Hi Tinkity,

What have your other symptoms been? My earliest symptoms-- before joint pain--were ringing in my ears, a stuffed up feeling in my head and sensitivity to sound which was the worst.

Even turning the page of a book while I was reading in bed would sound so loud I couldn't take it....and I had to shut the ringer off on my bedside phone or it would jolt me like a lightening bolt when it rang. After the sensitivity to sound went away after a month or so, then I started with ' tennis elbow' joint and tendon pain that would migrate to different parts of elbow. I still have the ear ringing but the stuffed up head is clearing. Joint pain remains and now stiff neck which is lessening.

I am one week on Doxycycline and waiting for blood test results for Lyme etc.

Well, I have an entire history written up on my computer, but it's rather long. My symptoms started very suddenly and got worse over a couple of days. Within that time I was shipped to a bigger hospital with suspected Guillain Barre Syndrome. I had an MRI of my spine and they said I was fine, told me to relax, and tried to send me home with Xanex. It started with horrible pain and weakness in my legs. It got to where I was so shaky, weak, and in pain that I couldn't walk or even write my own name. Within a month or so I was walking better, and within 3 or 4 months I felt pretty strong, but never back to normal. I had another episode a couple months ago; not as bad as the first. My legs often feel as though they are coming out of being asleep. I'm very tired. *sigh* I saw a neurologist last week finally (this started over a year ago) and he was rather dimissive. I am very frustrated. Does Lyme ever come on that strong and come back in waves with periods of near remission? Can you have Lyme with the pain being in your muscles, not your joints? I appreciate you all listening.  :)

:)

Well, at this point I might feel relieved to just find out what the heck it is. The thing is, I went from splitting wood for my fireplace on Friday, to having no reflexes and unable to walk straight, write my name or hold a glass of water by Sunday. My legs simply wouldn't hold me up. I couldn't type because of intention tremor. I developed what I suppose is severe Reynaud's... I couldn't button my coat. Everything tasted totally bizarre. I had severe muscle spasms... I couldn't even make my hands work to scratch my own face. And it wasn't just weakness and pain. My body, my hands, seemed to not get their messages... they moved slowly and not where and how I was trying to get them to. Can this happen in fibro or Lyme? And so suddenly? I am sorry if I seem to be running in here and shouting questions. I don't have much support in real life and I haven't had much help in the doctor dept. Thanks again for reading. Just being able to talk to people who may understand and who might not act like I'm nuts or just being difficult is such a relief! It would be wonderful at some point to tell my whole story and have someone relate. 

I'm doing my darnedest. :) I live in Quincy, CA. A little town in the middle of nowhere, unfortunately... and I have very little income for traveling to see doctors...

Hi Tinkity,

You asked if symptoms can come on suddenly and if pain can be in muscles instead of joints and if pain can come and go. Please bear in mind that my own blood tests are not in yet...BUT...I have been on Doxycycline for over a week now with much improvement to all of my symptoms. So I believe I do have a tick borne illness.

Now to address your questions in addition to the wonderful posts by others....

In my case, my tennis elbow symtoms and my stiff neck (which appeared much later in time) did come on suddenly. One day I was fine and the next day I had terrible pain. My stiff neck did not come and go--- it only got worse day by day but the tennis elbow did come and go. A lot. This is why I always believed I had tendonitis that just needed time to heal. But I no longer think that's the case.

The stiff neck was not joint pain-- it was muscle pain---radiated down my back and into shoulder blade and shoulder muscles. I had an extreme feeling of fatigue in these muscles but still had strength. Very weird all around. It got to the point where it became difficult to hold up the weight of my head. Thus I had to lie down a lot.

The tennis elbow was sometimes joint pain but predominantly muscle pain that would be in my forearm one day then it would migrate to my bicep then to a tendon then to an attachment. It jumped all over the place. I had tennis elbow one day and golfers elbowthe next. I never knew where it would hurt next....and then it would all be better for a few days only to return. It didn't matter if I rested my arm or used my arm. The pain had a mind of its own.

After being on Doxy for this past week, my stiff neck and shoulder pain is almost gone. I still have a little pain but it feels like a healing type pain-- like the muscles are recovering from trauma. Hard to explain....

My elbow still hurts a lot but as of today the pain is different....again it feels like a healing pain that I can't describe. I hope it's not just my imagination!

I still am having weirdo pains in one place then another. Like for example my left hand hurts today--- sort of a dull throbbing pain. It never has before. My fingers feel like I stoved them--joints are tight. Go figure.

I don't know all that much about Lyme-- I'm a newbie to it---and figured out the probability (that I have it) all on my own. I wish I had seen my LLMD sooner. But I didn't put all of my symptoms together until I really started going down hill and knew something was desperately wrong with me.

I feel confident the Doxy is doing its good work. I feel so much better in general and symptoms are lessening.

Best of luck to you! Hope something I've said here helps. But I'm not an expert!

One of my very first symptoms was weak legs. I remember this because I would continually search online under "heavy legs" and come up with articles on cellulite. I didn't know how else to describe it. My joint pains did not start until I started treatment, which was four years later! Still to this day, my symptoms change from day to day and I have been on antibiotics for a year and a half. Please be very careful and be sure to get to an LLMD. Believe me, if you have lyme, you don't want to fool around and waste time. I saw a neurologist, chiropractor, two endocrinologists, infectious disease, general practitioner, gynocologist and although they may be good doctors, none of them knew or know anything about lyme. It is a science in and of itself. The CDC doesn't even know it.

tinkity said...
You are welcome to email me, as well. nodarnid at hotmail dot com.

Hi Tinkity,

I tried emailing you at the above address, but it bounced back with a "user unknown" message.

You're still more than welcome to email me, I will be happy to give you the LLMD list!

JoAnn

P.S. I'll bet you're NOT "nuts"!!

Hi Tinkity -

Didn't read every response in detail. But to answer your question, no - no everyone has joint pain as a symptom.

Tests are unreliable because they look for antibodies rather than the organism itself. If you've been sick for a while, your ability to produce antibodies can be compromised.

The problem with spirochetes - they can bore their way into any body system - or for most of us - body systems. That's why the symptoms are so variable. There's not really a "typical" case.

Get pushy! Do you need any more of the "help" you've been getting?

In fairness to medical providers, in most cases we are asking them to diagnose some version of "I don't feel well". So ... like in my case, I think I'm the only case of Lyme the clinic has ever had.

The best advice i have is to get outside of the regular health care providers and find someone who looks at the big picture and is open minded.

I went to a Dr that primarily does Fatigue and Fibro issues. She's learned to check everything and look at how your whole system is performing. You could look at any test and maybe it's barely in the normal range. Most Drs would pass it off. If a whole lot of things are barely normal or a on the low side, your immune system is not working well. My Dr has learned that, in the course of treating Fatigue and Fibro, she has seen a number of cases of Lyme. Plus we've corrected a number of hormone and nutritional deficiencies. And found another chronic infection.

Keep going. You know something is not right.

Agmarr is making a good point and I think that is why my doctor had me take japaneese knowteed and teasel root tinctures for 7 days BEFORE getting the blood work done. (i think) because i have had this for so long and she knew it.

Hey don't for get to get the ISAC panel done from HEMEX labs. if you are this sick for so long and mimicing the classic diseases liek MS, Lupus, Gillian Bar....fibromyalgia... THICK BLOOD makes your heavy metal situation unbearable.

we all have heavy metals but when you have thick blood the metals do a number on you.

good luck and stay tuned into the group. the support is the biggest part of the treatment for this .

bucci