not doing so well

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

Moderators: JohnV, Arron, garym

not doing so well

Postby eric on October 10th, 2004, 12:16 pm

I have been posting here for a long time thinking about what was causing my bfs,It started to become acute with a fever, I took cipro and the bfs started. that was not the only thing that was wrong I slowly started over a weeks time to lose my memory and could not feel certain emotions. I went to the neuro thinking that he would know what this was. I started to get positional vertigo.and strange shocks across the head. i was told that i was having a mental breakdown.
i was sent to the hospital and told them all about what was going on, i thought either lyme or mad cow. the bfs was profuse. I was not acting rational. I was told if you dont stop looking for a disease you will end up at the psyc ward.
so i left and went back so many times . everytime i went to the hospital i was met by a phsyciatrist, they gave me a rubber band and said pull it when you think your dying. well the lyme became autoimmune and started to take nerves out. it was a slow process. after a while I thought i was crazy and that was it . later two years down the line i had a fever again and throat swelled like a baloon, I thought it might be lyme again. how I wish that I was forcefull. within the next three months I had myclonic jerks
severe. wierd dreams and agitation. started to act out my dreams and the color purple danced behind my eyelids. I knew I was in trouble. i went toi the hospital and they would not treat me, saying that youve been here ten times since two years , then i tried the other hospital and they tested me for drugs and sent me home. I got progressivly worse, i then had to go to another hospital that did not know me and I got a spinal tap. they sent me home and said the test is abnormal but they dont know why, i told them to check for lyme but they ran out of specimen. now I was realy screwed. I went back to my doctor who oringinaly treated me and he said lets run the test .2 years before when I was in the hospital he showed my test were equivecal and gave me 2 weeks of doxy, it did nothing. now he sent me for a scan of the brain and it was postive. now he tried to give me the same dose again for sever neuro lyme. he doubled the dose and I responded. as i was getting better form the lyme there was alot of damage that I believe was encephalitis, i have a pupil that is larger then the other with a host of neuro problems. I am scared that I wont make it if the cells for certain body process are dead.
the antibiotics did helpbut they found that an antimalarial realy stopped the process. there are many things you can get from a bite.
so if it bothers you about bfs and you have more then just bfs I think that you schould look for other causes .
eric
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

Postby garym on October 10th, 2004, 4:06 pm

Eric,

First let me say that I'm sorry things aren't getting better for you. One thing I would look at as a possible contributing factor are the quinolones (cipro and others). Many of the problems you describe are known side effects of these antibiotics. I belong to another group that deals exclusively with these side effects, and several of the members there have lyme and were worsened by antibiotics such as cipro. I only mention this because if you are sensitive to FQ's (quins.) it is important that you avoid certain foods such as poultry because they are treated with the agricultural equivalent of cipro (mfg. by Bayer). And exposure to these drugs through food sources prolongs suffering and delays healing. Like I said, there have been several people suffering from lyme that have had bad reactions to fq's, also some antimalaria drugs are close relatives to fq's and have caused the same type of problems.

Now I'm not claiming that the cipro is the cause of your problems, but it is worth investigating as a contibutor, IMHO.

Hope you get to feeling better soon, and let me know if I can help you.

Gary
garym
Moderator
Moderator
 
Posts: 1889
Joined: August 23rd, 2003, 1:24 pm
Location: Texas

levaquin

Postby eric on October 10th, 2004, 7:04 pm

they gave me levaquin about 4 months ago and the twitches spread to new area.s
and now there everywhere..
eric
i think that quinlons have the ability to come in contact with motor neurons.
eric
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

Postby dwl on October 11th, 2004, 12:57 am

Is this the same Eric we all know about but not signed in? If so:

Eric - read this very carefully.

YOU DON'T HAVE BFS.

YOU HAVE NEUROLOGICAL LYME DISEASE.

THE OTHER PEOPLE ON THIS BOARD HAVE BFS. THEY CANNOT GIVE YOU ADVICE BASED ON YOU HAVING BFS BECAUSE YOU DO NOT HAVE IT. YOU ARE SCARING THE NEWBIES.
User avatar
dwl
Hero
Hero
 
Posts: 312
Joined: September 22nd, 2002, 4:50 am
Location: UK

benign fasciculation syndrome

Postby eric on October 11th, 2004, 8:53 pm

I was posting and believe me im not trying to say other people have lyme.I am merely stating that my presentation to my existing condition was termed benign fasciculation syndrome. now granted I had alot of other things that were wrong with me like electrical sensations,brain fog,dizzyness,aches all over the place, muscles that were very tight, wierd sensations, myoclonus,fingers moving on thier own, feeling like I was going to die...
now some people may have this form of bfs as that was what i was told, why do you not want other people to here my story?why do you feel that what you are talking about is more in line with the topic then what im talking about?we all have bfs common>now im not stating that everyone will have a presentation like myself but I can assure you that id like to let people know so that they dont make the same mistake.
Im only trying to help the people of this board in a humane way..
ericx
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

Postby Stephanie on October 11th, 2004, 9:17 pm

bfs is a blanket term for twitching for unknown reasons (I could be wrong-this is what I got out of a conversation w/my neuro). I think that 99.99% of the time it's a benign cause. There are many reasons for the twitching. Some will never be known and some will be discovered by routine lab work checking for imbalances, thyroid problems etc etc. My neuro told me that Lyme disease can cause twitching too. I think in my case, because I have a history of having Lyme disease along w/numerous deer tick bites (I live in an area where Lyme is common) that Lyme disease is somehow behind my twitching. I think everyone who twitches should have lab work done to rule out all these things just in the hopes that there is something that can be done about your specific case. If all tests are neg then it is time to come to grips with it and learn how to accept and live with your benign, annoying condition. That's the part that I have trouble with because I twitch so darn much!
Stephanie
Saint
Saint
 
Posts: 945
Joined: June 28th, 2004, 8:36 pm

twitching

Postby eric on October 13th, 2004, 8:03 pm

My twitching started with a fever,after that I was told that I schould ignore the symptoms, well after 1 year i noticed that the fascicualtions slowed down , the 6 months later I started to get all sorts of weird things, sleep jerks,acting out in sleep,hallucinations while trying to sleep. enlarged pupil, wierd sleep states.
now im not saying that anybody here has it this way but I believe that if I had taken the antibiotics at start that I would be ok now. I had many neuro signs.
I believe but im no doctor that I destroyed my motor neuron,s . at a year and a half they became brisk and that is where the down hill started. I hope I am wrong. they cant find any deficets at all yet I am getting weeker every day. I hope this does not continue.
eric
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

doxy

Postby John_JR on October 17th, 2004, 5:25 pm

So many times I see posts on here "do vitamins help" or "I stopped drinking coffee" or "I stopped eating this or that". Since BFS waxes and wanes, its truely hard to pin down what is helping. Now that I look back, I can say that nothing I have EVER tried has really done anything to affect my BFS (weather good or bad) until now. I'm not here to promote drugs, but doxy has been the ONLY drug that has actually changed by BFS symptoms. 1st for the worse, especailly the "hot spot" twitches everyone here talks about. I usually get one or two a hot spot twitches a month, but when initially on doxy, everyday! It has since gotten better.

I really can't say if I have Lyme or not. I've never had a positive test result and doesn't rule it out either. What I can say is that doxy has been helping me (slowly). Up until two months ago, aside from random bodywide twitching I've always had many facial and constant eyelid twitches. Example, every time after sneezing would bring out several twitches all over my face and eyelids. Now, two months later, I can sneeze or flex all my facial muscles and maybe only one twitch comes out! Now that is a measure of success! No vitamin, no herb, no phsyco drug, no muscle relaxer has ever done that for me!

FACT that doxy has had an impact on my symptoms is yet another point on my score card that (my) BFS is pathogen related. After all, antibiotics are only suposed to kill germs right, and for my BFS to be improving, my BFS must be germ related. Take this for what it's worth. I'm not saying doxy will be the cure for me. It could harm my body in other areas for long term use. But I finally found something that is affecting the behavior of my BFS unlike any other drug, herbal, or diet I've ever tried. Believe me, I've had 15+ years to try a whole lot of things in my life!!

As far the anti-protozoan drugs, this is a new concept I've been really thinking about. My BFS may not be a bacterial infection at all. It could be a parasite, which could explain why BFS has never gone away or killed me yet. Also might explain why doxy would have a marginal benifit. My wife (who I "gave" BFS too) gets numbing sensations too and has a really low red blood cell count. Her BFS cycles with her menstrational periods. More evidence there is and infection we are dealing with here. She's not on doxy yet (I'm still the guini pig).

So until I find the answer, I still consider myself a BFS sufferer.
John R.
User avatar
John_JR
Senior Member
Senior Member
 
Posts: 66
Joined: April 28th, 2003, 8:27 pm
Location: Florida

twitching of the face

Postby eric on October 17th, 2004, 6:06 pm

i read that twitching of the face was a sign of lyme, dr burrascanno hints.. look it up!
also get your tests and sent them to igenix right away as here on long island we have found out that they closed stonybrook lyme center, because i believe the tests were not acurate. alot of people got negatives even though they were positive.
i took test western blot : quest labs and two bands
i took test western blot : igenix labs 8 bands all for lyme!!!!
as of last week I was on zithromax and my symptoms got much worse, wierd sensations in the back spine. i got so week on my feet that i had a hard time walking , i was so bad that i saw three neuro,s in three days, i started to take doxy at 600mg a day and the problems at night and wierd numb feeling along the back and throat dissapeared, thank god for doxy!!
eric
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

twitching of the face

Sponsor

Sponsor
 


Return to Experiences with BFS

Who is online

Users browsing this forum: Yahoo [Bot] and 1 guest