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Postby skinny on October 31st, 2003, 12:14 pm

Gary,

I heard horror stories of being "floxed" and that's why I put Cipro on the end of my antibiotics to try. (BTW, the link didn't work) Another lady on an IBS board says her lactose intolerance and IBS symptoms go away while on Cipro. I understand with the 300+ organisms living in the gut each antibiotics will have varying responses.

I'm curious what different antibiotics did you go through and what for?

I'm surprised with all the antibiotics most people go through, they don't get Irritable Bowel Syndrome. Antibiotics are like a coin toss.

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Postby garym on October 31st, 2003, 5:42 pm

Skinny,

I took cipro back in june for a suspected urinary tract infection (didn't have one!). A few days after completing the rx, noticed twitching in the calves. The only other antibiotics I've had in the past year or so was doxy. My GP rx'd it just in case i had lyme. The test was neg. and no herx. or improvement so I'm pretty confident that Lyme isn't my problem.

I'll post the site again, hopefully it will work. http://www.geocities.com/quinolones/ Be careful with cipro, it is believed to be a pretty potent neurotoxin, especially in people who already have underlying problems.

Good luck,
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IBS and Fasciculations

Postby Sahti on November 2nd, 2003, 12:50 am

Skinny! I have to inform you that I can sympathize with you. Extremely, I first fell ill with severe IBS back in early 2001. It was so bad that I almost died in 2 different hospitals from not being able to eat, dehydration, and so many anti-IBS drugs running through me. Be careful with the anti-biotics and work with your doctor, I've come to find that in almost all cases... you have to suggest treatments TO your physician. Also, if you see a Psychiatrist, they can prescribe anti-depressants that help very much with IBS. If it wasn't for Remeron, my IBS wouldn't have left. (It's not completely gone, but almost).
I see a strange connection between IBS and Fasciculations. I seriouslly think physicians should be looking into it.

Also, Garym, I'm intrigued by your findings... what anti-biotics aren't toxic to the neurological system? Do you know? For people who DO have Lyme, and need anti-biotics, which ones should they avoid (besides Cipro)?
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Postby garym on November 3rd, 2003, 2:08 pm

Sahti,

I couldn't tell you which antibiotics work well for lyme, other than the usually doxy which is commonly used for the treatment. As far as antibiotics that seem to be very toxic to neuro system, there is an entire class known as fluoroquinolones. The class includes many drugs such as Floxin, Levaquin, Cipro and many more. If you are interested in the subject, I suggest you follow the above referenced link and do a little research. It is shocking how many people end up with symptoms so very similar to ours after taking these drugs. As I already said, I feel my problems are directly linked to cipro.

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Re: Oh my Goodness!

Postby eric on November 3rd, 2003, 10:31 pm

Sahti wrote: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?

]
lyme disease is a bacteria that lays in the nerve pathways of the brain. there is no reliable test but as far as symptoms go ibs can be a part of lyme and having to take anti phsycotic drugs is another indication of lyme. front what you mention here you were taking an antibiotic and you stopped early. I did the same thing and the lyme took over very quickly. you cant stop the antibiotics you have to be on high doses for a year to kill the lyme and at that you may still have to go back on antibiotics. do you have anything else like severe anxiety that does not sound like a normal type? let me know.
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Postby eric on November 3rd, 2003, 10:36 pm

skinny wrote: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.

skinny

my colon shut down completely due to lyme encephalapothy. it has since returned with antibiotics but it takes a long time . lyme can evade antibiotics by changin to cyst form.
ten days is not long enough for lyme , try six months too a year!!1
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Postby Sahti on November 10th, 2003, 5:10 pm

Antibiotics keep having a more and more pround connection with BFS. I think we should tell our doctors to look into it.

Eric, my physician ordered a blood test for Lyme. It came back negative, but they told me that a lot of times it's inaccurate. I also told them about my abnormally high IGG blood count and they told me that it might be an indication of Lyme. I do live in Pennsylvania, where deer hunting seasons are extended because there's too many deer! My mother got bit by a tick in Maryland, in 1984, (2 years before I was born) and my dad pulled it out of her neck with tweezers. Since then she has had joint pain, IBS and buzzing. She was tested only once for Lyme through a blood test, and they said it was negative. I disagree. And I think she may have even passed the Lyme to me when she was pregnant... only I have severe IBS, anxiety and fasciculations.

you asked if I had any other strange symptoms. I believe I covered them all, except for one of the times 2 years ago when I had to be rushed to the hospital. The IBS was so severe that I couldn't eat and was passing out. But what prompted me to call the ambulance was the way that my legs kept convulsing every 5 or 10 seconds, then my whole body would convulse as well. It went on for 2 days like that...but it may have been caused from beginning my first day on Paxil that day.
:(
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Postby skinny on November 10th, 2003, 5:23 pm

Sahti,

My IBS started soon after the twitching. My IBS symptoms were severe and excessive flatulence and constipation. I was farting on most days 100-200 times a day. Anything with lactose killed me. Probiotics eventually helped bring it down to 10-50 a day, but still it was too much. The antibiotics I took knocked it down to 0-10 which is normal.

Actually now the Flagyl that I was on started to kick in on day 7. For the past few days I had very little visceral sensitivity, less incomplete evacuation. Now I can eat lactose like there's no tommorow. I do believe my IBS had a bacterial correlation to it. Now I wish I've gone on the Flagyl longer because I don't think it's completely wiped out. Once you restart the same antibiotic it doesn't work as well as before.

Eric: you can go on antibiotics for a year?! wow didn't know about that. Have you heard anything about Biaxin? If my lactose intolerance returns, I'll go on that next.

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Postby eric on November 10th, 2003, 10:01 pm

Sahti wrote:Antibiotics keep having a more and more pround connection with BFS. I think we should tell our doctors to look into it.

Eric, my physician ordered a blood test for Lyme. It came back negative, but they told me that a lot of times it's inaccurate. I also told them about my abnormally high IGG blood count and they told me that it might be an indication of Lyme. I do live in Pennsylvania, where deer hunting seasons are extended because there's too many deer! My mother got bit by a tick in Maryland, in 1984, (2 years before I was born) and my dad pulled it out of her neck with tweezers. Since then she has had joint pain, IBS and buzzing. She was tested only once for Lyme through a blood test, and they said it was negative. I disagree. And I think she may have even passed the Lyme to me when she was pregnant... only I have severe IBS, anxiety and fasciculations.

you asked if I had any other strange symptoms. I believe I covered them all, except for one of the times 2 years ago when I had to be rushed to the hospital. The IBS was so severe that I couldn't eat and was passing out. But what prompted me to call the ambulance was the way that my legs kept convulsing every 5 or 10 seconds, then my whole body would convulse as well. It went on for 2 days like that...but it may have been caused from beginning my first day on Paxil that day.
:(

did they put you on antibiotics?
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Postby skinny on November 13th, 2003, 11:04 am

eric: Could you list the antibiotics you took and for how long?

I finished my Metradizanole course (500mg 3x/d for 10 days). After day 7, my bowels started to get better. I had a lot less visceral sensitivity and a few days later had decent stool formation. A few days I felt normal. I can still eat lactose foods with no gas. I had a spell of D a couple of days ago - stools turned pale too, so I took a supplement that stimulates bile salt production in the liver and it got my color back to brown. I started taking l-glutamine and whey protein to stop the D and looks like it's working.

My twitching has been the quietest since I first started.

Now I'm thinking to try a course of Biaxin 500mg 2x/d for 7-10 days.

Hmm I wonder if I stuck to the Metra for longer. I got a refill on my Rx but wanna try the Biaxin.

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Postby Sahti on November 14th, 2003, 2:14 am

Skinny - You said your stools were WHITE?! I'm sorry but that's not normal. I think you should see a Gastrointerologist. They had to rule out every digestive disorder in the world before they diagnosed me with IBS, it was a 2 year process. Also, did you know that antibiotics can cause diarreah? It clears out all the bad bacteria, acting as an enema or flush. Try some herbal supplements like Gastro Calm, and drinking pure aloe vera juice helps with symptoms.

Eric - They didn't put me on antibiotics. In fact, they didn't even mention it. I'm thinking of going over their heads and going to a Lyme Disease Specialist. Though I do remember my IBS/anxiety problems began following an antibiotic for Bronchitus. My fasciculations came out following an antibiotic for an infected ear peircing, and once more I was on antibiotics a few months ago for a bladder infection and the symptoms seemed to have gotten a little worse. I'm really taking this hard...
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Lyme Connection

Postby John_JR on November 25th, 2003, 3:08 pm

Hi all,

I have had these symptoms for 15 years now. I found this forum about two years ago and until then didn’t know how many of us share this affliction. This applies mostly to us that have been twithing for a long-time. I do believe in the Lyme connection. Furthermore, I am one of the opinion that it is transmittable or contagious from person to person. The proof I can offer is the FACT that my wife of 4 years now has the same exact symptoms. She can attest that she never experienced these twitches, needle pains, or IBS problems before we got together. Doctors of course will laugh if you tell them this. Eric is right, many doctors just don’t understand Lyme. I just want to pass this important piece of information on, as many of you might not understand where you got it. I just feel so terrible that I gave this to her. It pains me when she gets a twitch that lasts for days.

I’ve had Lyme tests to but all negative. Been on antibiotics on and off throughout my life for various non-related issues. Each time I believe my BFS has gotten worse. Eric, thank you for your posts. I look forward to visiting New York some day to get those tests.
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Re: Lyme Connection

Postby eric on December 3rd, 2003, 9:17 pm

John_JR wrote:Hi all,

I have had these symptoms for 15 years now. I found this forum about two years ago and until then didn’t know how many of us share this affliction. This applies mostly to us that have been twithing for a long-time. I do believe in the Lyme connection. Furthermore, I am one of the opinion that it is transmittable or contagious from person to person. The proof I can offer is the FACT that my wife of 4 years now has the same exact symptoms. She can attest that she never experienced these twitches, needle pains, or IBS problems before we got together. Doctors of course will laugh if you tell them this. Eric is right, many doctors just don’t understand Lyme. I just want to pass this important piece of information on, as many of you might not understand where you got it. I just feel so terrible that I gave this to her. It pains me when she gets a twitch that lasts for days.

I’ve had Lyme tests to but all negative. Been on antibiotics on and off throughout my life for various non-related issues. Each time I believe my BFS has gotten worse. Eric, thank you for your posts. I look forward to visiting New York some day to get those tests.


lyme disease test are never accurate remember that and you want to be on antibiotics for a least 6 months just to see it reverse.
you might have spread it to your wife through intercourse .
bottom line antibiotics heavy and long course of time.
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Lyme and BFS link

Postby John_JR on December 7th, 2003, 4:53 pm

Eric,

I will be making a new appointment with my doctor. I'm going to request an antibiotic trail and was wondering what type and dose would give the best results to test if this is in-fact a deep lyme infection? I know Lyme requires many months of anti-b treatment, but would a month be long enough to guage any direction or any improvement in symptoms?

I agree that I may have transferred BFS to my wife via intercourse (especially if this BFS is due to a hidden Lyme infection). I read somewhere that the Lyme bacteria are closely related to syphilis bacteria genetically. We all know that Syphilis is an STD so why not Lyme? I would even go as far to say that the majority of us long-time sufferers of BFS _is_ related to some type of parasite. It could even be a variant of a Lyme-like pathogen that is easier transmitted between humans and not easily detected in typical Lyme screening.

I know typical Lyme sufferers complain of stiff neck as one of the more common symptoms. I noticed that many of my twitches that re-occur (hot spots) could be traced to my neck region. Example, once I had a twitch on my right thigh lasting for days. I discovered by extending my neck in a specific direction cause the twitch to subside while I maintained that position. Returning my neck, the twitch came back. Same thing with a facial twitches but I've had more success with a heating pad and/or ice pack to the neck to help resolve them most of the time. One nerve cell can be up to four feet or longer. So a twitch in your foot may be coming from an irritated nerve fiber in your upper leg or spine/neck. I believe this parasite is festering around the nerve endings typically in the spine and more specifically in the neck at the base of the skull. In lyme it is said that the bacteria dying releases toxins that wreck havoc on your nerves. The bacteria life cycle also explains why we all feel BFS wax and wane so often. Some days a few hundred twitched, other days thousands. Drinking alcohol puts a strain on your liver and kidneys making it harder for your body to rid of these toxins and we usually feel worse after drinking.

You all may think I'm looking too deep into this but I've had 15 years with this curse called BFS and I've had plenty of time to analyze it's various aspects and behavior. I've kept a journal throughout the years and unfortunately spreading this to my wife has been the biggest discovery in my life. I'm convinced that (at least in my case) this BFS is infection-related. The hard questions remain: is it lyme? is it a new variant? is it bacterial? is it viral? is it curable? is it detectable by the medical industry? does the CDC know of this possible new STD - do they even care $$ ? If I'm right, we can expect more and more people to coming down with this disease - yes disease.
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Re: Lyme and BFS link

Postby eric on December 7th, 2003, 11:46 pm

John_JR wrote:Eric,

I will be making a new appointment with my doctor. I'm going to request an antibiotic trail and was wondering what type and dose would give the best results to test if this is in-fact a deep lyme infection? I know Lyme requires many months of anti-b treatment, but would a month be long enough to guage any direction or any improvement in symptoms?

I agree that I may have transferred BFS to my wife via intercourse (especially if this BFS is due to a hidden Lyme infection). I read somewhere that the Lyme bacteria are closely related to syphilis bacteria genetically. We all know that Syphilis is an STD so why not Lyme? I would even go as far to say that the majority of us long-time sufferers of BFS _is_ related to some type of parasite. It could even be a variant of a Lyme-like pathogen that is easier transmitted between humans and not easily detected in typical Lyme screening.

I know typical Lyme sufferers complain of stiff neck as one of the more common symptoms. I noticed that many of my twitches that re-occur (hot spots) could be traced to my neck region. Example, once I had a twitch on my right thigh lasting for days. I discovered by extending my neck in a specific direction cause the twitch to subside while I maintained that position. Returning my neck, the twitch came back. Same thing with a facial twitches but I've had more success with a heating pad and/or ice pack to the neck to help resolve them most of the time. One nerve cell can be up to four feet or longer. So a twitch in your foot may be coming from an irritated nerve fiber in your upper leg or spine/neck. I believe this parasite is festering around the nerve endings typically in the spine and more specifically in the neck at the base of the skull. In lyme it is said that the bacteria dying releases toxins that wreck havoc on your nerves. The bacteria life cycle also explains why we all feel BFS wax and wane so often. Some days a few hundred twitched, other days thousands. Drinking alcohol puts a strain on your liver and kidneys making it harder for your body to rid of these toxins and we usually feel worse after drinking.

You all may think I'm looking too deep into this but I've had 15 years with this curse called BFS and I've had plenty of time to analyze it's various aspects and behavior. I've kept a journal throughout the years and unfortunately spreading this to my wife has been the biggest discovery in my life. I'm convinced that (at least in my case) this BFS is infection-related. The hard questions remain: is it lyme? is it a new variant? is it bacterial? is it viral? is it curable? is it detectable by the medical industry? does the CDC know of this possible new STD - do they even care $$ ? If I'm right, we can expect more and more people to coming down with this disease - yes disease.


let me start by saying a couple of things, lyme started years ago in 87.it started to sit in the nerves of the neck and the back of the head. there was all sorts of wierd electrical shocks and extreme anxiety that was not consistant with what every one else was feeling. they told me many times that I did not have lyme even after bieng treated for a tick bite.
the test always said that I did not have it so they would not treat me .
that is the problem with lyme they cant tell you if you have it or not. as long as you walked into the office and you can walk out then so be it he does not have lyme. lyme present as autoimmune disease with one difference, one is reversable.
my doctor told me the reason that i had jerks and fasciculations is because the nerve pathways are inflamed, causing jerking and fasciculations. the reason is the brain is missfiring the signal is jammed and so the electrical current stimulates the muscle to missfire.antibiotic slowly resolve the problem over time.
biaxin 1000mg a day for 6 months to a year.
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Re: Lyme and BFS link

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