It all started 7 months ago, I had a nasty infection which I believed to be sinus. I went on antibiotics for 10 days which caused some bad intestinal problems and then for some reason I went into this totally over emotional state and thought I was dying of Colon cancer. Now this is not like me at all. I was just in this very bad period of depression and anxiety that literally had me in bed for at least 4 weeks.

During that time I started having the following symptoms, Muscle twitching all over my body, especially insteps of feet and legs. Dizziness, severe anxiety and mood swings, ear ringing, nuasa, muscle cramping, tingling sensations in hands and feet, and feeling like someone was taking a needle and sticking it in my calves. Now after seeing a nuerologist and nueromuscular specialist and a normal EMG (1 twitch was found but it was not ominous I guess) I am still left with almost all of the neuro muscular symptoms and have also started to get achy numb feelings in my left hand which seems to be coming from the joints at the base of the thumb and wrist. I have also had TMJ off and on for several years. I can't really get any doctors to look into why they might be occuring.

The Neuromuscular Dr. says it is Benign Fasiculation syndrome but I still feel something has caused these symptoms and I'm not happy to just "live with it"
The twitching, cramping, brain fog, tingling and prickling sensations and the weird feeling in my left hand are driving me crazy.

I talked my GP into ordering the Elisa test but I now it will come back negative. She won't order the Western blot for me and said if I had Lyme diease and have had it for a long time I wouldn't be able to do anything about it anyway. Do my symptoms sound similar to anybody out there.

Thanks for listening,
Donna

Donna, big favor to ask. Go back to your initial post and make SHORT paragraphs of 6-8 lines of text vs. one humongous paragraph. Use EDIT which is he pencil icon. Enter afterwards so it posts.

We lymies need space between text to help our brain fog and comprehend what we are trying to read.

WESTERN BLOT TESTING: make sure it is done by 1 of 3 top lyme labs: Igenex, Bowen, or MDL. Read in the links below for more info.

Betty G., Iowa

WELCOME To LYMENET

Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
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neuropathy in lyme is often asymetric and at a very low wavelength in the neural fibers. most people with lyme do not register on the EMG at all.

have you had an MRI to look for brain lesions? those, hoping you don't have them, if found are indicative of either MS or Lyme.

MS can then be ruled out by a spinal tap.

you can also have your spinal serum sent out to check for borrelia, the agent of lyme, to a speciality lab like MDL (www.mdlab.com) or Igenex (www.igenex.com) for testing.

i would see a second neurologist for another opinoin and discuss the possibility of CIDP or Chronic Inflammatory Demyelinating Polyneuropathy. this could be secondary to lyme infection.
http://www.specialtylabs.com/books/display.asp?id=885

go to the support groups link and check for an LLMD (lyme literate md) in your area for a complete lyme workup.

Welcome to Lymenet.

Sorry you're having such a rough time. You will have to research & make up your own mind about seeing a Lyme Literate Medical Doctor.

The very fact that you reacted to antibiotics could very definitely be a clue.
Healthy folks don't get worse on antibiotics; Lyme patients do.

Lyme Disease is a diagnosis based on symptoms. The Western Blot test is merely a tool to support this clinical diagnosis.

Lyme Disease can do whatever it wants in the body. It can cause any symptom. That's why Lyme-ignorant doctors have such a rough time diagnosing it. It is called the "New Great Imitator."

If I were you, I would not hesitate to be evaluated by a Lyme Literate Medical Doctor (LLMD). If you do have Lyme, you will be preserving you future.

An LLMD understands folks can have a negative Lyme test, but have a raging infection.

In fact, the sickest folks usually have negative tests.

I had to have Zithromax 250 mg twice daily for about 10 days to elicit a positive Igenex Western Blot IgM & IgG test.

In fact, I was diagnosed by an LLMD on my first office visit before my Igenex results had even returned from the lab.

You deserve to know whether or not you have Lyme Disease. Left untreated or undertreated it can be debilitating.

If you wait too long it will slip into the chronic stage. When it gets in the brain------it's hard to get it out. I know that personally.

If you had syphillis, wouldn't you be quick to get to a doctor & get it treated? Of course you would. And it's the same when checking for Lyme Disease.

This is not a scientific board so no one should be telling you what you do or do not have yet. Only an LLMD can diagnose you with Lyme Disease (LD).

Be sure and do not take any RX steroids as this will further depress the immune system & allow LD, if you have it, to flourish.

Many folks have LD, but have never had a rash.

Here's the best handbook for Lyme which has a symptom list:

Diagnostic & Treatment Guidelines

www.ilads.org/burrascano_1102.htm

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Another good site is;
www.ilads.org

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Lyme Disease - The Basics is a great booklet to read also.

Go to: www.LymePa.org

Click on the tan booklet icon located under the TEEN INFO. icon.

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Links for new Lymenet members:
http://flash.lymenet.org/ubb/Forum1/HTML/029260.html

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If you need to find a LLMD near you, hop over to Seeking Doctor and someone will need to e-mail you privately. Or, go to LDA icon at left screen & click on their Doctor Referral.

If it turns out you do have Lyme Disease, remember the clock is ticking.

Keep asking questions. We want to point you in the right direction so you can get to the root cause of your health problems.

Lyme Disease---------its never what you think it is.

Best Wishes,
Jan

I was the sinus infection queen!!! And that's exactly how it started. 2 rounds of Levaquin (without taking acidophillus because no one told me) left me still

dizzy, a chronic case of the runs, then I started seeing floaters and spots, horrific head and neck pain, and all of the symptoms you mentioned (and some fun new ones).

After 3 mos of heck, I took myself to the ER and a CAT Scan revealed a 'chronic sinus infection'. 12 weeks of Levaquin kind of cleared up my sinuses, but the muscular issues/heart palpitations and emotional issues kept getting worse.

I saw over 12 different specialists. 2 PCR's and 2 Western Blots from my insurance testing center (Quest). No one would listen.

An MRI revealed lesions on my brain. When a neuro said 'lets do a spinal to rule out

MS (which is B_, because ruling out MS is like trying to rule out Lyme) I FINALLY went to an LLMD.

Please post on "Seeking a Doctor" and don't waste any more time with your GP or neuros. And don't let any of them talk you into a Spinal Tap - they're only about 30% accurate and extraordinarily painful for Lyme patients if not done properly.

Even if you've had it for years, you can recover with treatment. And finding an LLMD could save your life.

Oh and, Welcome to Lymenet!!

You've found the right place!

I was diagnosed with Lyme July 04 and have had 2 positive tests. I had many of the symptoms you described particularly tingling, numbness, needle pricks and also itching especially in feet, ankles & shins. My left thumb suddenly went numb on Thanksgiving. After 3 days it returned to normal. And has been fine since.

Other tingling has moved around but is lessening. The pain and thumping in my ear is getting better.

I took Doxyclycline for 4 months and it wasn't strong enough. Finally I got to an LLMD who switched me to a higher dose of Tetracycline. I began to improve immediately and some days the symptoms are almost gone.

I've gotten great relief for my foot & ankle pains/aches/restlessness from podi patches. Here's where you can order them http://www.akgnaturals.com. Fullfillment09 told us about those. You can search for recent posts about podi patches. I tried other patches I got on ebay but they were not as good.

Visits to Neurologists & Rheumatologists were a total waste of time for me. Most Dr.s know less about Lyme than the Lyme patients here do! Even worse they can be insulting & condescending.