I have had several symptoms for almost 2 years now and all my blood work always comes back ok.
I had a Elisa done about 3 months ago and it was negative. My symptoms include...
Joints cracking and popping all over comes for a while then goes a way for a while then comes back.
Twitching all over my body day and night and jerking when falling a sleep at night.
Stiffness in my body and many mornings not even wanting to get out of bed. This seems like it also comes in cycles.
The twitching and jerking has only been going on for 4 months.
My primary doctor prescribed me 3 weeks of Doxy as a precautionary for lymes after one week I had to stop taking it.
I felt like my throat was almost closing up or that I had something in my throat. The crazy thing was while I was taking the meds the only time I felt alright was when I was eating or drinking.
I also seemed to be running a fever and had some night sweats.
My doctor switched me to Amoxicillion for 4 weeks. I took it and started to feel much better.
I was being able to sleep better and not waking up in the middle of the night.
This was a nightly thing waking up every night in the middle of the night and sometimes just having trouble falling a sleep because of the jerking.
The twitching and jerking seemed far less and I began to get very excited.
That was short lived. Now that I have stopped the meds it seems like it's all coming back.
Does this sound like it could be lymes to you?
I live in central illinois and my doctor told me there is not lymes in this area.
A couple of other symptoms i have noticed is petchiae on my fingers and arms that comes and goes.
I also got a cold sore on the outside of my lip when on the amoxx and I have never had one of these in my life. I also have darkening spots on my arms.
They are not super noticable to everyone but I can tell a difference in my skin.
Any help greatly appreciated. Mike
Posted by landerss (Member # 17732) on :
Hey Mike - It sure sounds like Lyme to me - I've had all of your symptoms at one time or another, including getting viral symptoms like a cold sore during treatment & skin spots. I take it you're a marathoner? Sorry to be welcoming another fellow runner to Lymeville... Lynne
Posted by Ocean (Member # 3496) on :
Hi Mike, Welcome to Lyme.net. I am so sorry that you are going through this.
You have many Lyme symtpoms, classic symptoms.
The fact that you were feeling better with ABX is a sign that you are infected.
Please post in the seeking doctor's forum for an LLMD. I will also PM you about one that I will be taking my son to next month.
The Lyme Elisa test is garbage. I had the test in 1997 and it was negative. I stopped looking for answers shortly after and have been sick for far too long now.
I would hate for you to be the same.
Most medical doctors do not know very much at all about Lyme Disease (as I'm sure you've seen).
Lyme is found in all 50 states. It is commonly misdiagnosed as Multiple Sclerosis, Fibromyalgia, Chronic Fatigue Syndrome, ALS, and a few others.
I am sure there are people with those diagnosis' in your area. Some of these people most likely have Lyme and are being given improper diagnosis' and therefore treatment.
I'm glad that you found LN. It has been a life-saver for me.
Take care, Ocean
Posted by marathonrun10 (Member # 19350) on :
Yes I am a runner. I am really tired of doctors telling me everything is ok with my blood work and the Elisa says I'm negative. Any advice on lyme doctors in central illinois?
Posted by marathonrun10 (Member # 19350) on :
Thanks to the both of you for your response Landress and Ocean. They have actually tested me for ALS 2 different times because of the twitching and it has come up negative. Thank Goodness. My Neuro dr. thinks it's in my head. He even questioned to me as if i was really twitching. So I took a video on my phone of the twitching and then he decides he should give me a MRI. I'm very frustrated with my doctors, not sleeping well at all.
Posted by Mountaineer (Member # 14085) on :
Your story and symptoms sound identical to mine.
4 years and still know answers.
Posted by adamm (Member # 11910) on :
Absolutely. Illinois is in fact hyper-endemic, as is the whole midwest, and a negative test means nothing. Unfortunately, for whatever reason, there's a coverup of the disease's realities being perpetrated by the folks at the public health agencies--you can read more about that here:
So get yourself to a doctor who knows the truth--several of which I'll send you the info of.
Posted by Alv (Member # 15192) on :
Oh..yes you have it...watch out if you have RMSF also ...and you have coinfections for sure with it....( bart also)
Posted by marathonrun10 (Member # 19350) on :
What is RMSF? Thanks for responding everyone!
Posted by bettyg (Member # 6147) on :
hi mike; so you've got mail!! good; thanks for breaking up your text for us neuro folks! perfect now.
RMSF is rocky mountain spotted fever and can be fatal!! so check that one out.
sleeping; have you had a sleep study done to check for sleep apnea where you STOP BREATHING an wake up gasping for air. are you a SNORER?
someone suggested it to me, and yes, i have apnea and RESTLESS LEG SYNDROME ... perhaps your twitching!
others; i sent mike llmd info for ill, s wisc., and s. missouri.
but if you have other info, PLEASE SEND TO HIM PROMPTLY!
take this link to your drs. saying THERE'S NO LYME IN ILLINOIS OR ANY STATE!! WRONG; ALL 50 STATES HAVE IT!
1980 - Jan. 2008 ...all 50 states broken down by years!
Betty note: I tried printing out the chart, but it goes SIDEWAYS, and tried printing in pages 1, 2, 3; it kept printing page 1 only! So just a warning if others try to do this; use your PRINT REVIEW FIRST which I did, and indicated DIFFERENT pages, but still got page 1 only! I gave up after 8 tries! uffda Posted by electrolite (Member # 16404) on :
Mike,
I'm sorry you are having these symptoms. They are definitely indicative of Lyme Disease.
I understand being told that "You don't have Lyme" when your test comes back negative, when actually the tests are highly inaccurate, especially the ELISA. The same thing has happened to me.
Many doctors are ignorant and/or in denial concerning Lyme.
I'm not sure what you mean by darkening spots on your skin, but overworked and worn out adrenal glands can lead to Addison's Disease, which can cause darkening of the skin.
Lyme Disease does wear out the adrenals because it causes so much stress on the immune system, so this could be something to look into.
If the spots are small and more like a rash, then it could be Lyme or one of the co-infections like Rocky Mountain Spotted Fever, as already mentioned. There are other co-infections that also cause skin rashes.
I hope you can find a good Lyme-literate doctor. Post in the "Seeking a Doctor" forum.
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