no more fassciculations!

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no more fassciculations!

Postby eric on October 1st, 2003, 5:55 am

like many of you I had alot of the same symptoms and the neuros did not know what was going on, the neuros said that they cannot diagnose lyme because they simply are not trained for it so if you have alot of undiagnosed strange symptoms that a neuro does understand or if they say your too in tune with your body suspect lyme. if you go to the doctor and you get the ilysa test and the western blot it may be negative in most people who have had it for years. generally you can have lyme for 10 to 20 years and be living with it and no further progression at this point and time is likely untill you get stressed and the bacteria will take over at that same time with a fever and chills. alot of us had gotten muscle twitches after bieng sick and some after taking an antibiotic,
my thought is if you take the antibiotic and it was for 5 days at al low dose you *beep* of the spirochetes in your body and they came back with a vengence. anyway I believe that some but not all of you are harboring a lyme antigen and if this sounds like you and you think there is an autommune
connection going on well that is just what lyme does it inflames the nerves of the body and you as the host feel like there is something seriously wrong and the faster you find out if it is the better off you will be.
I hope every body that comes on this site is cured and they would make me the happyest person alive, i know what you all have been through and it is no fun, hang in there and get better!!
eric
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cure?

Postby skinny on October 11th, 2003, 7:53 am

Eric,

How long have you been twitching?
How long have you stopped twitching?

Also do you attribute the cessation of twitching to antibiotics?

I never took antibiotics except for eyelid drops years ago for pink eye. My twitching started after a 6 day water fast which later screwed up my digestive system. I have IBS and lactose intolerance.

I recently went on neomycin sulfate 500mg 2x/day for 10 days to treat the IBS.

Interesting enough I could eat dairy again with no gas, but my LI returned after a month.

Next I was on doxycycline 500mg 2x day for 7 days. Didn't do a thing except for diaherria for a few days.

Now I'm on amoxicillan 500mg 3x per day. Ironically I ate a bowl of ice cream with no gas! Must be the some bad bacteria festering in my digestive system.

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Re: cure?

Postby eric on October 11th, 2003, 8:33 am

skinny wrote:Eric,

How long have you been twitching?
How long have you stopped twitching?

Also do you attribute the cessation of twitching to antibiotics?

I never took antibiotics except for eyelid drops years ago for pink eye. My twitching started after a 6 day water fast which later screwed up my digestive system. I have IBS and lactose intolerance.

I recently went on neomycin sulfate 500mg 2x/day for 10 days to treat the IBS.

Interesting enough I could eat dairy again with no gas, but my LI returned after a month.

Next I was on doxycycline 500mg 2x day for 7 days. Didn't do a thing except for diaherria for a few days.

Now I'm on amoxicillan 500mg 3x per day. Ironically I ate a bowl of ice cream with no gas! Must be the some bad bacteria festering in my digestive system.

skinny

I had ibs in the beggining of lyme, for 8 years and i did not know that lyme was causing it. the fassciculations started three years ago after a fever and right after steroids for a week. do you live in or have ever had a tick bite that you know of?is the antibiotic making it worse?if so then you have lyme if not then you may have something else.true bfs!
I have been on antibiotics 400 mg a day of doxy and it went right to work but the feelings that you go thru are terrible. herx is what they are called but they are so good because you know you are getting better. a herx is a worsening of symptoms when on antibiotics. it is a wax and wane cure that takes a long time to heal. it has been 2.5 months and know I am on biaxin and doing well.ibs and fasssiculations can also be cause by anxiety so keep that in mind. good luck!!!
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Postby dezza on October 21st, 2003, 10:05 am

Interestingly I had really bad headache, 'flu like symptoms and the like, took antibiotics for 5 days and then it kinda cleared up (not really), then not long after that the twitches started and haven't really stopped. I think I was bitten in malaysia by a tick or something while I was trekking, but I didn't think lyme disease had spread to asia - is that possible?
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Postby garym on October 21st, 2003, 10:08 am

Deeza,

What type of antibiotics did you take? There seems to be a link between certain antibiotics and twitching.

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Postby dezza on October 21st, 2003, 11:30 am

i honestly am not sure - having an uncle who is a doctor can be a bit dodgy - i was given samples, although i'm sure i can ask him what i was given.

i know i had anxiety attacks whilst taking them, which was weird since i'd never had that before....

and after that the twitching started...
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eric...

Postby Renae on October 21st, 2003, 2:20 pm

Eric-

I've found what you have to say about this whole lyme connection very interesting and sometimes I wonder if this is what's going on with me...of course I'm grasping at straws here. My question is...how do you get your doctor to go along with this?? My rheumatologist has tested me for lyme already and just kind of brushes it off when I mention it to him. It's very frustrating. It's like he doesn't even bother looking into it any further.

Just curious how you found a doctor willing to do all this testing and put you on antibiotics, etc.????

Renae :)
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Re: eric...

Postby eric on October 23rd, 2003, 9:27 pm

Renae wrote:Eric-

I've found what you have to say about this whole lyme connection very interesting and sometimes I wonder if this is what's going on with me...of course I'm grasping at straws here. My question is...how do you get your doctor to go along with this?? My rheumatologist has tested me for lyme already and just kind of brushes it off when I mention it to him. It's very frustrating. It's like he doesn't even bother looking into it any further.

Just curious how you found a doctor willing to do all this testing and put you on antibiotics, etc.????

Renae :)

hi renae
there is a big problem in the world,doctors dont understand lyme disease!! and they cant test for it either. the reason bieng is that the infection is of the nerves and not the blood and therefore it cannot be tested for period!
if you have fasciculations and you have been to a rheumatologist then that may suggest lyme disease but you need infectious disease doctors or columbia presbyterian in new york. they understand lyme. they have a test and it is called a spect scan. the test can detect hypoperfusion of the brain. that is low blood flow to the front of the brain and other areas.
lyme sometimes shows up on this test if you are having cognitive problems. also lyme effects the anterior horn cells producing missfiring of the muscles. if you want to persue lyme then you have to tell your doctor that you want a trial of antibiotics for two weeks to see if you have a herx reaction if you dont then you dont have lyme. if you do you are on your way to recovery and you will love life once more!!!
also i went through many doctors and hospitals and in the end I had to fight to survive the doctors diagnosis and that what you have to do too.
let me know how it goes
eric fasciculation free!!!!!!!!!!!
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Re: eric...

Postby eric on October 23rd, 2003, 9:29 pm

Renae wrote:Eric-

I've found what you have to say about this whole lyme connection very interesting and sometimes I wonder if this is what's going on with me...of course I'm grasping at straws here. My question is...how do you get your doctor to go along with this?? My rheumatologist has tested me for lyme already and just kind of brushes it off when I mention it to him. It's very frustrating. It's like he doesn't even bother looking into it any further.

Just curious how you found a doctor willing to do all this testing and put you on antibiotics, etc.????

Renae :)

renae i just noticed on your profile that you are from an endemic area of lyme!!!! and you dont need a rash
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Postby eric on October 23rd, 2003, 9:32 pm

dezza wrote:Interestingly I had really bad headache, 'flu like symptoms and the like, took antibiotics for 5 days and then it kinda cleared up (not really), then not long after that the twitches started and haven't really stopped. I think I was bitten in malaysia by a tick or something while I was trekking, but I didn't think lyme disease had spread to asia - is that possible?

dezza
lyme disease is in every country of the world and believe me you can get it!!!!

follow your gut instinct .
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Postby dezza on October 27th, 2003, 7:02 am

well one of the anti-biotics i took was floxin?
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Postby garym on October 27th, 2003, 2:46 pm

I think your problems could actually be from the floxin. Many people have reported twitching, muscle pain, and nerve damage as a side effect of drugs such as floxin and many others in the same class. I blame my problems on the drug cipro which is in the same class. Take the time to visit the following site http://www.geocities.com/quinolones/, and the read the Cohen report titled something like Peripheral Neuropathy Associated with Fluorquinolones. (not sure of the exact title). It is on the home page of the site

Good luck,
Gary
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Oh my Goodness!

Postby Sahti on October 29th, 2003, 8:17 pm

Eric! You wouldn't believe how happy I am to have been enlightened about Lyme relating to Fasciculations.

My story in a nutshell, is back in February 2001. I had Bronchitus and a couple weeks after I got off the anti biotics, I suddenly and unexpectedly was plagued with severe IBS and anxiety. I had to be homeschooled (I was a Sophomore in High School) and I was in and out of the hospitals... seeing many specialists. They all told me it was stress related, but they couldn't figure out why I had such a high IgG and IgA count on my blood test - which indicates something is irritating the atuo immune system. The physicians then thought it was Celiac Disease. An auto-immune disease... after an endoscopy they found it was NOT Celiac, and passed the high IgG/IgA off as NOTHING.
I learned to live with the severe IBS and am still homeschooled. However, August 2002 I had Fasciculations in my neck after I was put on a 5 day anti-biotic (Amoxicylin) for an infected ear peircing. They went away after a month.

Just last March, after being put on Zyprexa (anti-psychotic) I began getting severe fasciculations beginning in my spinal area (back) and they spread from there. My shrink stopped the Zyprexa but the fascics didn't go away, and he concluded that the Zyprexa didn't cause them. I still have them. My Neurologist said my EMG/EEG are fine, indicating I have BFS....
However. My abnormally high IgG and IgA test results lead me to believe I may have Lyme. My mother had a tick 2 years before I was born, I usually spent time in the woods when I was young, and I once had a flea problem with some pets. What do you think?
"The most important things are the hardest to say, because words diminish them." - Stephen King
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Postby skinny on October 31st, 2003, 12:00 am

Eric,

So did the doxy get rid of your twitches? I was on it for 10 days but it didn't do anything for me. I was hoping it would get rid of the IBS since that is worse than the twitching. The neomycin got rid of my lactose intolerance (or bacterial overgrowth in the small intestine). It came back after a month. Amoxicillan was great for the LI.

Now I'm on Metranidazole (brand name: Flagyl) for 10 days. I'm on day 7 but I'm not seeing any good results on my bowel movements. I suffer from mild constipation (pellet stools, clumped stools, incomplete evacuation, visceral sensitivity in the colon).

At least I can eat ice cream. :D Before the antibiotics the slightest amount of lactose gave me gas. Larger amounts gave me more gas. I dunno if it will return.

I'm thinking of trying Biaxin or Cipro after some rest period with a course of probiotic Culturelle (lactobacillus GG which is proven in studies to survive stomach acid and colonize the gut, prevents C. Dificile infection)

Eric: did your IBS go away too? I'm interested in your story. Maybe the antibiotics you were on got rid of the bacteria causing it. Dr. Pimentel of Cedas-Sinai has done 2 studies that shown antibiotics helped or got rid of IBS symptoms.

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Postby garym on October 31st, 2003, 10:49 am

Skinny,

Before you try cipro, I'd visit the above referenced site. Cipro has been linked to severe PNS and CNS adverse drug reactions. Twitching and muscle pains are common as a result of these drugs. It may not cause any problems for you, and your problems may be worth the risks, just be informs about the drugs before you use them.

By the way, I tried doxy for three weeks after reading some of erics early posts, but it didn't help twitches or cause the herx reaction. Guess I don't have lyme.

Good luck,
gary
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