posted
I've mentioned twitching before but wanted to follow up on a recent post of twitching.
Has anyone been diagnoised with bfs before being diagnoised with lyme?
I know twitching can mean many things.
Has anyone here been told by a llmd about twitching?
One more question. I have an appointment with a llmd soon.
I did see a infectious disease doctor and ran all bloodwork with came back negative.
Is it possible to still have lyme?
Posts: 64 | From New Jersey | Registered: Dec 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Hi--welcome. Hopefully lots of folks will come along to answer your question...but let me say a resounding YES it's possible to still have Lyme!!
Twitching is a classic Lymie symptom, was one of my first.
You need to be tested for Lyme and other tick-borne illnesses at Igenex Labs in Palo Alto, CA.
Posts: 3528 | From US | Registered: Apr 2007
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-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
Yup, I'm a twitcher Honestly, it is creepy and it used to really bother me alot.
I guess the longer it goes on (and I was diagnosed bfs by a neuro before lyme), I am able to ignore it more and more...I'm not so worried about what, in the realm of possibilities, it could possibly mean (als).
My LLMD said lots of his patients twitch. I notice mine will be particularly bothersome for a few weeks or months (especially when starting a new medicine, for instance) and then things will settle down a bit and I may even not notice it much for a little while.
From one twitcher to another, you're not alone! Definitely pursue IGenX & a clinical diagnosis from a knowledgeable LLMD.
Posts: 136 | From North Carolina | Registered: Apr 2007
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posted
Very possible to still have Lyme. What test(s) did they run?
IGeneX testing is worth doing.
Twitching was my first and most major symptom. From subtle little twitches in my hand, to major muscles like the thigh. Eye twitch, too. I also had problems with "vibrations" - like I was shaking under my skin.
Do keep a journal of your symptoms each day.
You should insist on some Doxy while you sort out the testing issue.
~webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
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posted
Twitching was my first symptom. It became body wide and then some of my muscles started to jerk (myoclonus).
At first my neurosurgeon (had three back surgeries) called it bfs(benign fasciculation syndrome). He sent me to the ALS clinic in town to be checked out (it was my idea not his). He never thought I had ALS.
I had read fasciculations was a symptom of ALS. Well I did not have ALS. It took me one year to get a diagnosis of lyme and an additional six months before the twitching completely went away.
My LLMD put me on Peter Gillham's Natural Calm. It's a magnesium powdered supplement. I have a cup of it every night. It and the antibiotics I'm still on for lyme are the reason the twitches are now gone.
Barb
[ 31. January 2008, 01:35 AM: Message edited by: sfcharm ]
Posts: 281 | From san francisco | Registered: Jun 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME*)!*)! !*)!*)!*!*)!*!
I twitched everywhere and had chorea major and chorea with athetosis in my left habnd- but had rippling twitches- eye twitches, facial twitches, body jerking twitches, whole body jerkings, whole side of body twitches, tiny twitches, tons and lots of twitches, ALL GONE with IV Rocephin thank goodness*)!)*!!
Yes, you can test neg & still have it. Many people esp neuro Lyme is like that- Best wishes and welcome*)!! Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Thanks for all the support. I was wondering is the test kit from Igenex free when sent to your house and how much is the basic western blots.
Posts: 64 | From New Jersey | Registered: Dec 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
The test kit is sent free from Igenex.
However, for tests 188 and 189 (Lyme Western Blot IgM and IgG)
The cost is 190.00 which you need to include when you send your blood back in.
Well worth the expense if you ask me.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I have the muscle twitching on a daily basis as well and a positive Western Blot from Igenex. Like Barb, I also have the muscle jerking.
However, the symptoms are better since starting the ABX in August and the Magnesium in December.
I would also like to say that I had a negative Lyme test from Labcorp prior to the Igenex test. My LLMD in July clinically thought I had it and we went ahead with the ABX based on my symptoms.
If I can get rid of the twitching, jerking, ringing ears now I would be a happy camper.
Good luck.
Posts: 25 | From Missouri | Registered: May 2007
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posted
Thanks for the info. Wanted to mention I had bands 23, 28 show up on quest blood work.
Posts: 64 | From New Jersey | Registered: Dec 2007
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posted
My teenage son had twitching, but I have noticed that since he started on Rifampin and Doryx (a gentler form of Doxycycline) in Dec. 2007 to treat Bartinellosis, the twitching has stopped. He also tested negative for the first time for Babesiosis after 1 1/2 years of treatment.
Hope this helps.
Posts: 8981 | From Illinois | Registered: May 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I had twitching yes and llmd said it was the lyme. Take all suppliments complex b vitamins, magnesium,cq10, etc I had great improvement also with b12 injections.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I used to be a twitcher. Twitching all over my body. The one area that used to scare me was my face twitching.
It would worry me that I could go thru some bell's palsy sx and at that time I was feeling the near death years.
I had twitching when I was on long term abx and I also had twitching long after I quit abx. Don't know if increased doses of B-12 have stopped it?
I do sublingual B-12 suppls. High doses under the tongue. I can't remember the last time I had a twitch. Maybe a year ago?
My B-12 dose was too low for many years, due to not understanding how much of it my body was lacking. I do 3000mcg 5-7 days a week.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Mountain
Let me guess what BFS - is - Jay --
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
Hey ya, yes I'm a twitcher. Sounds like a 4 step program, eh? lol. Just joshing with ya!
Seriously, I could have written everything everyone else has written on this thread. I posted my twitching "short" story on adamm's post about als and twitching, it's my nutshell twitch story, if you're interested. I tend to post on most everyone's twitching thread, as it is, was my main symptom. What brought me to this board, and what got me "led to water" and boy, did I drink!
Back on the serious side, in my doctor travails, I saw my primary care doc first, he passed me off to a neuro doc, who spent all of 15 minutes running me thru his "neuro exam" in his office and gave me the BFS diagnosis. I wasn't buying this back then, and went on to a ID doc, who was on the verge of retiring, but who also said it was also probably BFS.
On to greener pastures, I got on this board and Sarah gave me the name of my LLMD. In 4 yrs of treatment (abx constantly, 4 yrs straight) my LLMD never addressed the twitching. He said that it was common, but did not give me specifics in what he was going to do about it, or what he thought might "cure" it. I didn't press him, but did my own researching, and tried various mag supplements, including Mag Tab SR, which made my twitching notably worse.
I gave up trying different mag supplements and just kept my own notes on when, how much, how long, etc. on the twitching. I never noticed any one thing making them come, or go. Except that stress (mental & physical) made them more intense, and last longer. Mostly, the twitching, although an everyday occurance, was intermittent throughout the day.
When I stopped taking abx (still off completely) in 2004, I noticed after a few months that there were periods of time (weeks, months?) where I could very distinctly say I had NO twitching. I quietly got excited about this, but felt if I made too big a deal out of it in my mind, they'd come back! Jinx or what?
Sure enough, slowly, the twitching has come back. My life is just not set right now where I can control the amount of stressors I have at any one time. I am married to a very difficult person who has not made my life easy in any sense of the word, and does not support my having lyme and problems. I"m sure that isn't helping my stress levels!
In any case, I have 2 teenage sons at home, so stress is just a fact of life.
Both my son's have lyme, both have been off abx for years, and both have twitching as well. They did not start off having twitching as a symptom, but both had them come on gradually. I do not know what this might mean for them, but I am trying not to freak out that all 3 of us are twitchers! Yikes.
I think the BFS diagnosis is one of the garbage can names given to a subset of symptoms that no doctor has yet to figure out what to do with, including LLMD's.
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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Honestly, it is creepy and it used to really bother me alot.
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