LymeNet Flash: Introducing... ME and a question or 2.

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Posted by DrTchocky (Member # 7565) on :

Hi,

This is my first post here. I've been having a number of weird symptoms over the past few months and have been to a Neuro twice who diagnosed me with Benign Fasciculation Syndrome, but upon visiting the BFS Forum which is an awesome support location, I happened upon a post that said many times BFS can be a symptom of Lyme Disease and can be diffrentiated from BFS by the presence of other symptoms.

I should say that I personally don't remember being bitten or having a rash but my mom says I did have a round red rash that was sort of crusty... not a pretty picture.... when I was 9 or so. I am 25 now, and for the past 16 years I really haven't had any symptoms... is this normal?

The reason I started worrying is that a few months ago I started getting really fatigued and impatient. Then, on a weekend a while later, I had weird feelings in my muscles as if all of them were itching to get out and totally restless. The next day upon waking from a nap I noticed that I had been really sweating a lot during my sleep and it was akin to the feeling I had when I finally broke a fever. Over the next few days I also had chills for no reason. If a piece of clothing rubbed me the wrong way I'd break out in chills.

Even more recently I started having small fasciculations in my calves and upper arms which prompted my visit to the neurologist. There is no muscle weakness whatsoever but I just feel "bleh" all the time.

My brain has also become kind of foggy, not very difficult to concentrate but sometimes I have a hard time remembering words I know I knew... then magically a moment later it just pops into my head. The fatigue is still around and now, started these past two weeks, my neck is either aching a lot or sort of burning and my lower back is stiff... and my left eye is acting kind of weird.

Do these symptoms sound like Lyme? I would love to hear from some of you if possible. I will post a request here and in the doctor section for the names of some LLMD's in NYC or Brooklyn, NY area...

Thanks for listening.

Jason

[This message has been edited by DrTchocky (edited 05 July 2005).]

Posted by dafje (Member # 7121) on :

Welcome Jason

I think a lot of your symptoms sound like Lyme, though I don't know the first thing about Benign Fasciculation Syndrome. Does your mom recall if you had any flu-like illness around the time you got the rash?

Posted by DrTchocky (Member # 7565) on :

She's not sure... is the onset of flu-like symptoms a sure thing with a bite? And what of the dormancy for such a long period of time?

quote:
Originally posted by dafje:
Welcome Jason I think a lot of your symptoms sound like Lyme, though I don't know the first thing about Benign Fasciculation Syndrome. Does your mom recall if you had any flu-like illness around the time you got the rash?

Posted by hiker53 (Member # 6046) on :

I had a lot of benign fasciculations with lyme. I can't diagnose you, but I do know that taking tablets of magnesium glycinate made the fasciculations go away.

Posted by bg (Member # 46416) on :

Jason, sorry I know nothing about BFS. I'm not a dr., but it sounds like lyme to me. I was finally dx 7-04 & misdx for 34 years so your questions bring back alot of memories for me.

Welcome to this 24/7 educational & support group board!

Here's TREEPATROL's and TINCUP'S combination newbie links.
http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

Print off the links then check them off as you read as you could spend several months reading all of this.

print & read Dr. Barrascono's info first; you will come back to this often.

Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful!
http://www.lymeinfo.net/lymediseasetreatment.html

Some guidelines from Betty/others on using this message board:

* Do NOT use all caps when posting; it's hard on our eyes. But I know one of our members has macular degeneration, and all caps is what she can see & read so exceptions like this are acceptable for good reasons.

* We chronic, late-stage lymies can NOT read long paragraphs. So please limit your paragraphs to 6-8 lines max of text and double space between paragraphs.

* You can EDIT your text comments anytime. You can NOT edit your subject line so please make it as specific as possible instead of ``help, question'' etc. in order to have more readers/replies in trying to assist you. There are between 30-40 NEW/replies to post daily so we can't read all the posts on our limited time here...thanks for understanding.

* If you use the ``quote'' icon, please DELETE [B] bold at the beginning & ending of the quote. This makes it easier on our eyes.

* To just reply without quoting, go to the top or bottom of screen in the black & white area to reply or post a new topic. Many of us couldn't see it when we 1st started posting. Thank you for helping us all out!
* Bettyg

Posted by Sue vG (Member # 3143) on :

After spending several years on an active forum where most people were told or believe they have "BFS", I'm convinced that BFS is nothing more than undiagnosed lyme or other infection that affects the neuromuscular system. It's simply a set of symptoms.

A neurologist (99.95% of them, anyway) will not diagnose lyme. They won't test or screen you in any way for it because they "don't do" infectious diseases.

They are going to take all of your neuro symptoms, regardless of cause, and give them neurology names.

I "fired" my former neuro after being told, "You have too many symptoms." Da*ned right I have a lot of symptoms -- I have lyme! Now that's my first clue that someone may have lyme.

It takes a bigger brain and a smaller ego than the typical neuro has to step back and look at ALL of the symptoms a person is reporting.

Posted by Lymetoo (Member # 743) on :

Dormancy? Oh yeah! I've had Lyme for at least 46 yrs and was first dxd 5 yrs ago! I can't say I felt well all that time...I didn't....but Lyme can be very subtle at times.

sometimes our immune systems handle it and then wham-o you have surgery or a car wreck and there it is! right in your face!

Treepatrol's links http://flash.lymenet.org/ubb/Forum5/HTML/000569.html

Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

The cause and spread of Lyme http://flash.lymenet.org/ubb/Forum1/HTML/032259.html

More info: http://www.ILADS.org/

Lyme Wars http://www.wildernetwork.org/Lyme_Wars.html

Lyme Disease State Info http://www.lymeinfo.net/support.html

Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html

Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html

Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

http://www.anapsid.org/lyme/matthewgoss/index.html

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu

Posted by Lymetoo (Member # 743) on :

Lyme symptoms list

1. Unexplained fevers, sweats, chills, or flushing
2. Unexplained weight change--loss or gain
3. Fatigue, tiredness, poor stamina
4. Unexplained hair loss
5. Swollen glands: list areas____
6. Sore throat
7. Testicular pain/pelvic pain
8. Unexplained menstrual irregularity
9. Unexplained milk production: breast pain
10.Irritable bladder or bladder dysfunction
11.Sexual dysfunction or loss of libido
12.Upset stomach
13.Change in bowel function-constipation, diarrhea
14.Chest pain or rib soreness
15.Shortness of breath, cough
16.Heart palpitations, pulse skips, heart block
17.Any history of a heart murmur or valve prolapse?
18.Joint pain or swelling: list joints_____________
19.Stiffness of the joints, neck, or back
20.Muscle pain or cramps
21.Twitching of the face or other muscles
22.Headache
23.Neck creeks and cracks, neck stiffness, neck pain
24.Tingling, numbness, burning or stabbing sensations, shooting pains
25.Facial paralysis (Bell's Palsy)
26.Eyes/Vision: double, blurry, increased floaters, light sensitivity
27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
28.lncreased motion sickness, vertigo, poor balance
29.Lightheadedness, wooziness
30.Tremor
31.Confusion, difficulty in thinking
32.Diffculty with concentration, reading
33.Forgetfuiness, poor short term memory
34.Disorientation: getting lost, going to wrong places
35.Difficulty with speech or writing
36.Mood swings, irritability, depression
37.Disturbed sleep-too much, too little, early awakening
38.Exaggerated symptoms or worse hangover from alcohol

Posted by dafje (Member # 7121) on :

I think most people who get infected and develop Lyme have some flu-like period after being infected. The rash only occurs in 50% or so. But it's probably hard to tell this long after potential infection. You don't know when you were bitten, and the flu-like stuff doesn't occur right away, so even if you could determine when it could have happened it still leaves you with a couple of months. And you may just have had the flu or something else during that time. I think you shouldn't look back too much but just see if you recognise yourself in the symptom lists. If you do, try to find a doctor who knows a lot about Lyme (LLMD).

Posted by dontlikeliver (Member # 4749) on :

Ditto to what SuevG said.

DLL

Posted by lou (Member # 81) on :

Don't think you can always count on the flu like symptoms or bullseye rash. Neither one in my case, just started off with swollen knee a month or two later.

Lots of variation in how this develops and how long it takes to get really bad.

Posted by cbb (Member # 788) on :

Hi Jason,
Welcome to LymeNet.
Most of us have no medical backgrounds, but we share what we have learned through experience with Tick-Borne Diseases (TBDs).
After all, they say experience is the best teacher.

In my case, I removed a tiny tick after a maximum attachment time of 4-6 hours.
Some days later, had a bull's eye rash about the size of an egg.
Absolutely NO other symptoms for 5 to 12 yrs.

When symptoms started, they were so subtle, I thought they were due to aging.
I had just turned 50 & they always say you fall apart at 50.

Didn't get a diagnosis for another 5 yrs, but symptoms were still mild - bothersome but mild.

A few years ago, found I also had two Co-Infections, Babesiosis & Bartonella.

The symptoms you gave could all indicate Lyme, but they also could indicate co-infections.
Sweats & chills can be caused by Lyme, but they are also very common with Babesiosis.
Same with muscle & joint problems.

Like others have said,
you need to be evaluated by a Lyme Literate Med Dr (LLMD) - ASAP.
They know which labs will give the most accurate results for TBDs, they'll consider ALL your symptoms, they'll treat with a strong enough dose of antibiotics for a long enough time.

If it's not Lyme, a LLMD will figure out what it is.
But as for me, I'm putting my money on Tick- Borne Diseases.

Keep in touch & ask as many questions as you need to.

Posted by Tincup (Member # 5829) on :

Welcome.

Hope you feel better soon!

I would rather shoot myself in the foot than go to a neurologist for Lyme.

I would rather shoot myself in BOTH feet than go to an infectious disease doctor for Lyme.

A good Lyme doctor would be able to help you. I hope you go and learn all you can.

If it isn't Lyme they can rule it out for you too.

Good luck!

Posted by duke77 (Member # 5051) on :

I went to a neuro first big mistake. There is no Lyme in Georgia and it would start with Arthritis and you would have Bells Palsy. Incredible, and this guy went to Med school.

Most literature will tell you the flu like symptoms happen first. Unless I got reinfected the flu like symptoms happened to me years later and after that is when the Lyme symptoms could no longer go ignored. No bullseye that I remember but 10 yrs ago remember removing a tick from my leg. Wish I knew then what I know now. Hindsight

Posted by hatsnscarfs (Member # 6562) on :

Welcome DrT,
I was bit by a tick exactly one year ago. I removed the tick and watched for the classic symptoms. I did not get a rash, did not get flu-like symptoms & did not get joint pain.

I did get pain in my jaw & ear, trouble remembering things (especially where I was going in the car), started feeling kinda funny and then I got Bell's Palsy 3 1/2 weeks after the bite.

Over the last year I've had an amazing array of symptoms but still no rash or flu like stuff.

I'll add to what Tincup said, I'd rather waste my time doing nothing at home rather than seeing another Rheumatologist who did absolutely nothing useful for me. He did insult me, poke me and send me a huge bill!

I now have a wonderful LLMD. His card says Infectious Diseases.

Keep on reading and work on getting a LLMD appointment.
hatsnscarfs

Posted by treepatrol (Member # 4117) on :

Newbies List 07/6/05

WELCOME To LYMENET

How to Post what where explanations
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Rules
Here's more goodys! A typical response to newcomers.

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Lyme Disease symptoms 2005
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- = Not Present
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+/- = Equivocal = Indeterminate its there but not as intense as low) )

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